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

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

Shantha Rau Barriga is 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

Thousands of children and adults with disabilities in Brazil are needlessly confined to institutions, where they may face neglect and abuse. Brazil should make it a priority to provide support for people with disabilities to live independently and in their communities, rather than in institutions.

Many people with disabilities enter institutions as children and remain for their entire lives. Most of these institutions visited by Human Rights Watch researchers did not provide for more than people’s basic needs, such as food and hygiene, with scarce contact with the community and little opportunity for personal development. Some are tied to their beds and given sedatives to control them.

Posted: January 1, 1970, 12:00 am

At age 25, Leonardo Barcellos de Albuquerque is finally where he wants to be – at home, living with his mother in Rio de Janeiro, Brazil. He is creating his fourth music album – he released three other CDs over the past three years – and is also training for bocha, a tossing game that’s a Paralympic sport, similar to bocce or pétanque. 

But his joy of being at home will most likely be short-lived. Leonardo has muscular dystrophy, a progressive condition leading to severe muscle degeneration. And his mother, Celia, who is 60, suffers from severe back pain and is not strong enough to lift or move him.

Additionally, Celia is a retired civil servant so her pension is simply too small to support them. Friends are helping to pay for Leonardo’s medicines and their rent, and nongovernmental organizations are donating diapers and food. But without the money to hire a personal assistant, it is difficult for Celia to have Leonardo live at home.

That’s why, when a new institution suitable for Leonardo is built – it’s expected to be completed later this year – they’ve decided Leonardo will live there. They both would rather Leonardo lived at home. But for that to happen, they’d need support from the Brazilian government.

For now, this is not the case.

Leonardo’s experience is not unique. Thousands of people in Brazil live in residential institutions for people with disabilities. Most institutions are understaffed, leading to neglect and inhumane conditions. While most staff we spoke with were committed and well-meaning, a lack of information and training leads to abusive practices in some cases, like drugging patients without their consent or tying them to their beds.

Many families would have preferred to support loved ones themselves, but there are just not enough community-based services and financial resources from Brazil’s government for families to raise children with disabilities at home.

It won’t be Leonardo’s first time in an institution. He lived in one as a child, after a court took him away from his biological parents. When Celia visited the orphanage where he had been sent, Leonardo came up and introduced himself. He must have been charming, because, even though they never intended to adopt, Celia and her late husband brought him home and into their family.

“I found a family, which is what I was looking for and what I wanted for my life,” Leonardo said.  

Thousands of children and adults with disabilities in Brazil are needlessly confined to institutions, where they may face neglect and abuse. Brazil should make it a priority to provide support for people with disabilities to live independently and in their communities, rather than in institutions. 

When he was 9, he was diagnosed with muscular dystrophy. By the time he was 11, he could no longer walk. A few years later, Leonardo fell at school, and the school claimed they had no one to help him and he could no longer attend, Celia said. She was furious and fought with the school, to no avail. A teacher did come to their home, though, so he could continue his education.

As his condition deteriorated, living at home became more difficult. His mother left for work at 4 a.m. and came home at 5 p.m., and Leonardo spent the day alone. She would leave him a packed lunch and water where he could reach it, but occasionally the unexpected happened. “Sometimes I would try to do something and fall off the chair.” He would have to lie on the floor until his mother got home, sometimes urinating on himself.

When she found him on the floor, Celia felt desperate. “I also would not have the strength to get him up, to handle him.”

An institution seemed their only choice. So, when he was 15, he and his mother made the decision for Leonardo to live in an institution. “I suffered deeply when Leonardo had to be moved into the institution, but I had no other alternative,” Celia said. “The state doesn’t provide me with any support to care for him at home.”

His new living situation was good, but it wasn’t home. He didn’t like the food – the spaghetti and vegetables weren’t made with love the way his mom cooked, he said – and he shared a room with 24 other people with disabilities, their beds placed side-by-side. He was stuck in bed most of the day, even for meals. Everything ran according to a rigid schedule.

Still, the insitution’s employees did take them on outings to the beach or the zoo, and he made new friends there. Many of these friends had more severe disabilities than he did. This changed the way Leonardo saw the world and himself. “My limitation was about accepting myself,” he said. “But to see children who could smile even with greater limitations, I realized…” he trails off. “It made me better as a human being. It made me grow in a different way.”

Outside of missing his mother, his biggest issue was boredom. He needed activities to keep his mind focused, to keep it from traveling to dark places that left him feeling depressed.

Yet through his own ingenuity, and with the help of his friends and teachers, he kept writing music. “When I’m sad I sing and when I’m happy I sing as well, and that is something that keeps me motivated to live more, to live better, to live happier.”

Leonardo lived in the institution for nine years.

But his muscular dystrophy left him susceptible to infection – an ever-present danger when one sleeps in a room with so many people. He caught pneumonia twice. “I was scared that I could get sicker, and was afraid I’d die.”

In 2017, he and his mom decided he should come home.

He’s happy there, keeping his mom company. But it’s the generosity of others that has given him this opportunity. A nearby institution gives them food and diapers, which are very expensive. A nongovernmental organization gave Leonardo a wheelchair, and a friend donated his bed. Friends are helping pay the family’s rent and Leonardo’s speech therapist and physical therapist costs. Friends even helped them buy a hoist to move Leonardo out of bed and into his wheelchair. The costs of drugs alone – both for Leonardo, and for his mother, who has diabetes and arthritis – is prohibitive.  “I can’t make ends meet!” Celia said in frustration.  

For Leonardo to stay at home for good, they’d need a personal assistant for 20 hours a day – someone to help lift him and change his diapers. “The problem is, it’s very expensive, and we don’t have the money to pay anyone,” Leonardo said.

 Leonardo performs his song, “Luz do bem” (“light of good”), for which he wrote the lyrics and composed the music.

When he left the institution, a social worker said that the government should provide Leonardo with the same money it provided to the institution to care for him. But they haven’t seen any of it. “This money does not come to me and we do not know why,” he said.

He wants to stay at home to support  his aging mother. And he knows other people with disabilities feel the same way. “I want to help people in the same situation,” he says. “I believe that the government could provide better support to people with disabilities” and that everyone should “have the right of choice to live in your own house and not have to live in an institution without wanting to.”

He also hopes to bring about change through his music. One of his songs, “Luz do bem” (“light of good” in English), for which he wrote the lyrics and composed the music, is especially important to him. He even helped create a video for the song – with him singing – which is posted on Youtube.

“We talk about love in this song, that love can change the world, transform the nation. I believe that, through my music, I can spread the love for the world.” He hopes the song will help people understand each other better, and “contribute more to this love.”

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

Thousands of children and adults with disabilities in Brazil are needlessly confined to institutions, where they may face neglect and abuse. Brazil should make it a priority to provide support for people with disabilities to live independently and in their communities, rather than in institutions. 

(Rio de Janeiro) – Thousands of children and adults with disabilities in Brazil are needlessly confined to institutions, where they may face neglect and abuse, Human Rights Watch said in a report released today. Brazil should make it a priority to provide support for people with disabilities to live independently and in their communities, rather than in institutions.

The 83-page report, “‘They Stay until They Die’: A Lifetime of Isolation and Neglect in Institutions for People with Disabilities in Brazil,” found that many people with disabilities enter institutions as children and remain there for their entire lives. Most of these institutions visited by Human Rights Watch researchers did not provide for more than people’s basic needs, such as food and hygiene, with scarce contact with the community and little opportunity for personal development. Some residents are tied to their beds and given sedatives to control them.

“Many people with disabilities in Brazil are locked away in institutions in abysmal conditions, with no control over their lives,” said Carlos Ríos-Espinosa, senior disability rights researcher at Human Rights Watch and author of the report. “The government of Brazil should make sure that people with disabilities have the support they need to live in the community just like everyone else.”

This report is based on 171 interviews with people with disabilities, including 10 children, as well as family members, institution staff, experts on disability rights, and authorities from all levels of government, as well as visits to 19 institutions in the states of Rio de Janeiro, São Paulo, Bahia, and the Federal District.

Many institutions have a detention-center like atmosphere, Human Rights Watch found. Some have bars on their doors and windows. Conditions are often inhumane, with dozens of people crammed into rooms filled with beds packed tightly together. Most adults and children with disabilities in the institutions visited had few, if any, personal items. In some cases, the residents shared clothes, and in one institution even toothbrushes. Many people were confined to their beds or rooms around the clock.

Most children with disabilities in institutions received very limited education – or none. Research has shown that children’s physical, intellectual, and emotional development can be damaged by the absence of a one-to-one relationship with a caregiver. Most children in institutions Human Rights Watch visited have a living parent but over time often lose contact with their families.  

“Too often children with disabilities end up in Brazil’s institutions because families struggle to take care of them without resources and adequate community services,” Ríos-Espinosa said. “All children have the right to grow up in a family, and government resources should support families and children, not tear them apart.”

In Brazil, judges determine the placement of a child in an institution in exceptional cases when the child is at risk of abandonment, neglect, or violence, and there are no alternative solutions. But children with disabilities end up staying in institutions much longer than the legal limit of 18 months, often indefinitely. Although Brazil has foster care and adoption, these options should be developed further, Human Rights Watch said.

Human Rights Watch found numerous cases in which people with disabilities had been living in institutions all their lives, among them a 70-year-old man with an intellectual disability who had lived there since he was 5.

Many adults in institutions are deprived of their liberty in violation of Brazil’s obligations under international law because a guardian has placed them there, without their consent, and they have no right to contest their institutionalization. At the request of a relative or an institution director, courts can strip people with disabilities of their legal capacity, or the right to make decisions for themselves. A guardian then makes all decisions for the person, including in some cases to place them in an institution. Once there, they can’t leave unless the guardian agrees.

Most people in institutions are not allowed to make even everyday choices such as what and when to eat, who to socialize with, what television program to watch, or whether to go out and participate in a leisure activity.

Carolina [not her real name], 50, suffered a spine injury because of domestic violence that left her with a permanent physical disability. Her sons then placed her in an institution near Brasília. She described her life: “This place is very bad, it is like a prison. I don’t want to stay here. I’m obliged to be here. My sons don’t want to support me at home. I never go outside. I would like to go out, away from here. It’s my dream. When you come like this [with a disability], it’s over.”

In one institution in Salvador, an 18-year-old man with a progressive disability that gradually weakened the muscles in his legs had difficulty leaving the room he shared with another person. He did not have a wheelchair and moving on his own was extremely painful. Although the institution was just 200 meters from the sea, he was unable to go to the beach and said that his dream was to “see the sea.”

Many institution managers said they did not have adequate staff to provide individualized attention to residents, including children. Most institutions in Brazil are privately run. Nearly 70 percent have partnerships with municipal governments, according to the Ministry of Social Development response to the Human Rights Watch findings.

Under the international Convention on the Rights of Persons with Disabilities (CRPD), which Brazil has ratified, governments must respect the inherent dignity of people with disabilities by acknowledging them as people on an equal basis with others. This includes ensuring that people with disabilities can live independently in the community and not segregated and confined in institutions. Under the treaty, governments must also prevent discrimination and abuse against people with disabilities and remove barriers that prevent their full inclusion in society. All children, including children with disabilities, have a right to grow up in a family. No child should be separated from their parents because of a disability or poverty.

“Institutionalizing people with disabilities is dehumanizing,” Ríos-Espinosa said. “There is an entrenched belief that at least some people with disabilities need to live in institutions, but that simply isn’t true. Shutting people with disabilities away in institutions is one of the worst forms of exclusion and discrimination.”

Posted: January 1, 1970, 12:00 am

Summary

Leonardo, 25, has muscular dystrophy, a disability that causes progressive weakness and loss of muscle mass. He has lived in a residential institution for persons with disabilities in Brazil since he was 15. His mother felt she had no choice but to place him there. “I suffered deeply when Leonardo had to be moved into the institution…, but I had no other alternative. The state doesn’t provide me with any support to care for him at home,” she said. Her hope was that the institution could care for him in a way she could not.

Leonardo shared a room with 24 other men and women with disabilities. Beds placed directly next to one another, without even a curtain for privacy. Leonardo had no control over his life, subject to the schedule and decisions of the institution. He remained stuck in bed most of the day, even for meals, with nothing meaningful to do: 

I am placed in the wheelchair in the mornings, but I have to be put back to bed because … there is no one to put me back again in the evenings. I miss my home and would want to live with my mother, but I understand she is getting older and wouldn’t be able to support me physically.

In 2017, Leonardo moved back with his mother for a short period because the institution where he lived could no longer provide the specialized support he needed. By the end of 2018 he will move again to a different institution that is now under construction.

***

Leonardo’s experience is not unique. He is one of thousands of people in Brazil who live in residential institutions for people with disabilities. Most people enter as children and continue to live there as adults, some for their entire lives. In these institutions, children and adults may face neglect, inhumane conditions, and abuse, with little respect for their dignity and individual needs or preferences. Many adults in institutions are unlawfully detained in violation of Brazil's obligations international law because a guardian has placed them there, and they have no right to contest their institutionalization. The Brazilian government provides insufficient support for families of children with disabilities to raise their children at home and for adults with disabilities to live independently, which results in a reliance on institutionalization.

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Under international law, governments must respect the inherent dignity of persons with disabilities by acknowledging them as persons on an equal basis with others. This includes recognizing people with disabilities have the right to live independently in the community and not segregated and confined in institutions, where they are subjected to control by others. Governments must also prevent discrimination and abuse against people with disabilities and remove barriers that prevent their full inclusion in society. All children, including children with disabilities, have a right to grow up in a family. No child should be separated from his or her parents because of a disability or poverty.

This report documents a range of abuses against children and adults with disabilities in residential institutions in Brazil. The research is based on direct observations during visits to 19 institutions (known in Brazil as shelters and care homes), including 8 for children, as well as 5 inclusive residences for people with disabilities. In addition, Human Rights Watch researchers interviewed 171 people, including children with disabilities and their families, adults with disabilities in institutions, disability rights advocates, representatives of non–governmental organizations, including disabled persons organizations, staff in institutions, and government officials. Research was carried out between November 2016 and March 2018 in the states of São Paulo (including São Paulo and Campinas), Rio de Janeiro (including Rio de Janeiro, Duque de Caxias, Niteroi and Nova Friburgo), Bahia (Salvador) and Distrito Federal (including Brasilia and Ceilândia).

Most of the people with disabilities living in institutions Human Rights Watch visited in Brazil were isolated from society and had little more than their most basic needs met, such as food and hygiene. Most lacked any meaningful control over their lives, bound by the institutional schedule and the demands of the staff. Many people were confined to their beds or rooms for extended periods of time or in some cases around the clock. They were not able to make simple every day choices that most people take for granted, such as what and when to eat, who to socialize with, what television program to watch, or whether to go out and participate in a leisure activity.

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In eight of the institutions that Human Rights Watch visited, staff habitually restrained adults and children. In some cases, staff restrained adults to bed rails with pieces of cloth bound around their waists or their wrists. In two institutions, staff tightly bound socks or cloth around children’s hands to prevent them from putting their hands in their mouths or scratching themselves instead of implementing other methods, such as providing one-to-one personal support to prevent children from harming themselves. Staff in some institutions acknowledged that they gave adults and children medication to control their behavior, rather than for any legitimate medical purpose, without the adults’ consent. All restraints as a form of punishment, control, retaliation, or as a measure of convenience for staff should be prohibited.

Adults with disabilities in institutions had little to no privacy in 12 of the institutions visited. Up to 30 people lived in large wards or rooms with beds placed directly next to one another without a curtain or other separation. Some institutions had smaller rooms with fewer people in them, but also with limited privacy. Most adults and children with disabilities had few, if any, personal items, and in some cases were even forced to share clothes—and in one case even toothbrushes—with others in the institution. In one institution, staff did not provide women with sanitary pads during their monthly menstruation, offering only diapers. Staff in several institutions did not assist some adults to dress fully, such that adults wore only shirts or blouses and diapers. Human Rights Watch found that conditions and treatment were particularly bad in the institutions visited with large numbers of people with high support requirements. In some institutions for people with disabilities Human Rights Watch visited in Brazil, the conditions and treatment were inhumane and degrading.

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In all adult institutions visited in Brazil, institution directors or staff members told Human Rights Watch that nearly all people living there had been stripped of their legal capacity, or the right to make decisions for themselves, and were under the guardianship of another person, either the institution director or a relative. Most people in institutions had been placed there by guardians and cannot leave, even for a short period, without the consent of the guardian. Adults with disabilities who are deprived of their legal capacity and placed in institutions on the basis of their disability against their will, either without their consent or with the consent of a guardian, are victims of detention that is unlawful under the international Convention on the Rights of People with Disabilities (CRPD), which Brazil ratified in 2008. 

Carolina (not her real name), a 50-year-old woman with a physical disability, describes her experience in the institution when she spoke to Human Rights Watch:

This place is very bad, it is like a prison. I don’t want to stay here. I’m obliged to be here. My sons don’t want to support me at home. Although two of my sons come and visit me every two weeks, I never go outside. I would like to go out, away from here. It’s my dream. When you come like this [with a disability], it’s over.

Children and adults with disabilities alike had little or no meaningful activities inside the institutions we visited. Many lay in bed doing nothing or were placed in front of a television for hours on end. Insufficient staff meant that children with disabilities often lacked human contact on a regular basis. Few children with disabilities in institutions visited by Human Rights Watch attend neighborhood schools. Those who did have access to education typically received limited instruction in segregated settings.

The United Nations Children’s Fund (UNICEF), the World Health Organization, and decades of social science research have found that institutional environments can cause stunted physical, intellectual, emotional, and social development among children separated from families and placed in institutions due to lack of consistent caregiver input, inadequate stimulation, lack of rehabilitation, and other deprivations.

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Although Brazilian law intends the placement of children in institutions to last no longer than 18 months, many children with disabilities are placed in institutions for much longer periods of time. In most institutions visited, staff told Human Rights Watch that the majority of the children have at least one living parent. Many children with disabilities lose contact with their families and remain segregated in institutions their entire lives. In one institution, for example, all 51 residents had been there since they were children. Several residents were over 50 years old. As the director of an institution in São Paulo said: “They stay until they die.”

According to data from the National Secretariat of Social Assistance, as of 2016, there were 5,078 children with disabilities living in institutions. This number likely underrepresents the actual number, as the data is based on self-reporting by institutions. According to the same data set, 5,037 adults with disabilities live in institutions.

In Brazil, institutions are often the only long-term housing options for many persons with disabilities. Insufficient alternative independent living arrangements and community-based support services to ensure adults with disabilities can live on their own, with support as necessary, prevent many adults from living in the community. Under the social assistance system in Brazil, persons with disabilities who cannot support themselves independently or with assistance from their families are entitled to receive a monthly benefit (Benefício de Prestação Continuada, BPC) of 954 Brazilian reals (US$259, at current exchange rates). Parents of children with disabilities interviewed by Human Rights Watch confirmed that their children require support beyond the BPC, including services that are not consistently provided by the state, or available in sufficient quantities, such as speech therapy, physical therapy, mobility devices, and access to day care centers.

Most of the staff Human Rights Watch spoke with in institutions were highly committed and motivated to support persons with disabilities. They frequently emphasized that they were doing the best they could to support persons with disabilities with the little resources they had. However, even very well-intentioned staff often engage in unacceptable practices because they lack information and training, and because of a shortage of adequate personnel and other resources to care for large numbers of people, especially residents who require more intense forms of support.

Government Response

Brazil has a strong legislative framework on the rights of children and in 2016 parliament adopted a groundbreaking Law on Inclusion (Statute of Persons with Disabilities), which harmonizes the country’s legislation with the CRPD. The law establishes a new, rights-based framework, including accessibility, education, political participation, and legal capacity, amongst other fundamental rights. The government also has in place several programs to support persons with disabilities, including financial assistance, which it should consider expanding and strengthening.

The government relies almost exclusively on private institutions to house children and adults with disabilities. Most of these institutions, including those Human Rights Watch visited, are facing significant financial hardship. Brazil is currently experiencing a severe financial crisis that has resulted in budgetary shortfalls and cuts, including cuts to social services. Some institutions have agreements with municipal or state agencies for funding; in some cases authorities have not delivered funds in a timely manner or have stopped funding institutions for extended periods of time. In other cases, institutions are expected to secure all funds independently through local or foreign donations.

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Despite limited financial resources, the government and others who support institutions should look to responsibly reallocate expenditures to develop and expand accessible, quality-based community services. Research and practical experience in numerous countries has shown that support for services based in the community for people with disabilities, rather than concentrated in residential institutions, and are often no more expensive or not significantly more expensive than an institutionalized system.

Institutions in Brazil are licensed by the government. Judges, public prosecutors, and public defense lawyers visit institutions for children at least once every six months to review children’s placement in the institution. However, the state does not conduct regular monitoring of institutions for adults with disabilities. Although the law requires complaint mechanisms to be accessible to persons with disabilities, in practice they are not for people with various types of disabilities, making it difficult and in some cases impossible for them to file complaints about alleged abuses through existing channels.

One notable initiative underway in Brazil for people with disabilities is the inclusive residences program, which provides small group homes for up to 10 persons with disabilities, who have moved out of large institutions. Human Rights Watch visited five inclusive residences. This program may serve as a good first step toward enabling persons with disabilities to exercise their right to live independently. However, as they currently function, the residences do not fully ensure this right. As in institutions, residents do not have control over their lives, such as with whom to live or whether to live in the inclusive residence at all.

Inclusive residences may be useful in the short term as Brazil transitions away from large residential institutions, but they should not be seen as an alternative to programs that afford persons with disabilities the possibility of truly independent living, which can be facilitated by a range of in-home, residential, and other community support services, including personal assistance if necessary. The Brazilian government is also developing foster care and adoption programs for children, which should be expanded and fully include children with disabilities on an equal basis with all other children. 

Recommendations and the Way Forward

As a matter of priority, the Brazilian government should:

Develop a time-bound plan to phase out the use of residential institutions for children and adults and develop community-based services for individuals with disabilities and families of children with disabilities. This should include efforts to reallocate expenditures and other government programming away from institutions and toward increased supports to people with disabilities to live independently in their communities and for families to raise children with disabilities at home.
End abuses against adults and children with disabilities in institutions. The government of Brazil should create an inter-agency task force bringing together relevant authorities, including state prosecutors, and agencies at various levels to systematically monitor institutions, prevent and remedy human rights abuses, including concerns such as restraints used as punishment, control, retaliation or as a measure of convenience for staff; medication without consent and without clear medical purpose; and neglect. Ensure accessible complaint mechanisms.
In addition to the BPC benefit, ensure quality, accessible services for independent living for children and adults with disabilities according to their individual requirements, including personal assistance services, as well as targeted services based on the specific needs of the individual. Prioritize family-based care for children with disabilities on an equal basis with others, including by supporting families, including foster and adoptive families, with children with disabilities to raise them in the community.
Guarantee quality, inclusive education for children with disabilities living in institutions in mainstream schools, on an equal basis with others, and provide reasonable accommodations based on individual learning requirements.
Build upon the inclusive residences program to ensure they facilitate independent living, including essential life skills, of people with disabilities living there, rather than serve as substitute institutions. All residents should be there voluntarily, be allowed autonomy, and participate in the management of the residence.
Ensure that no adult person with a disability is deprived of legal capacity. Amend laws to remove the system of guardianship on the basis of disability and replace it with an effective system of supported decision making. This means ensuring that persons with disabilities receive the support they need to make choices and direct their own lives, including for medical treatment, parenthood, relationships, and living arrangements.

 
 

Methodology

Research for this report was conducted in November 2016 and March 2018 in the following locations in Brazil: São Paulo (including São Paulo and Campinas), Rio de Janeiro (including Rio de Janeiro, Duque de Caxias, Niteroi, and Nova Friburgo), Bahia (Salvador) and Distrito Federal (including Brasilia and Ceilândia).

São Paulo, Rio de Janeiro, and Bahia were selected because they have some of the highest concentration of residential institutions, including for people with disabilities, nursing homes, foster families, and other social welfare programs in Brazil. São Paulo has 1,586 such facilities and programs; Rio de Janeiro has 359; Bahia has 261, and Federal District 40.[1] Brasilia was also chosen because it is part of the Federal District and the location of federal authorities responsible for developing national policies, including for adults and children with disabilities.

This report is based on 171 interviews carried out in Brazil and by telephone preceding and following field research. Human Rights Watch interviewed 10 children, ages 10 to 18, and 50 adults with disabilities in residential institutions, 26 of them women. Other interviewees included 12 parents or other family members; 50 government officials (including heads of secretariats in the areas of social assistance, childhood and disability, members of congress, judges, state and federal prosecutors, state public defenders, members of councils for children, members of guardian councils, and legal advisors); 35 institution staff members; and 17 representatives of non-governmental organizations or disability rights advocates. Whenever possible, Human Rights Watch spoke directly with children and adults with disabilities.

Human Rights Watch visited 19 residential institutions for people with disabilities in Brazil, including 11 for adults; 8 for children (five of which were specifically for children with disabilities); one medical facility for children with disabilities. We also visited 5 inclusive residences for people with disabilities. We made 7 visits in Rio de Janeiro; 5 in São Paulo; 6 in the Federal District; and 6 in Bahia. We also visited two day care centers for children and adults with disabilities, where people visit during the day and return to their homes to spend the night. 

For the purposes of this report we use the term “institution” to refer to three types of institutions for people with disabilities Human Rights Watch visited: institutional shelters, care homes, long-stay hospitals, and facilities that are hybrids of these types of facilities.

The children and adults interviewed had a range of disabilities including physical, sensory (blind, deaf, and deafblind), learning, intellectual, and psychosocial disabilities. Some children and adults had multiple disabilities.

In this report, “child” and “children” are used to refer to anyone under the age of 18, consistent with usage under international law. Brazilian law defines children as anyone under 12 years old and children between 12 and 18 as adolescents.

Interviews with government officials were conducted in English with interpretation into Portuguese, or in Spanish, with the respondent speaking in Portuguese. Interviews with children and adults with disabilities were conducted in English and Spanish with interpretation into Portuguese.

In order to protect the privacy and confidentiality of the people we interviewed, we do not name the institutions we visited, and we have used pseudonyms for most people interviewed for this report.

For each interview, we explained our work in age-appropriate terms when needed. Before each interview, we informed potential participants of the purpose of the research and asked whether they wanted to participate. We informed participants that they could discontinue the interview at any time or decline to answer any specific questions without consequence. Interviewers told interviewees that they were free to not answer any questions.

Human Rights Watch interviewed children with disabilities in an age-appropriate and sensitive manner and ensured that the interview took place in a location where the interviewee’s privacy was protected.

Human Rights Watch also consulted national and international disability rights experts at various stages of research and writing. We also reviewed official documents, in particular legislation on social assistance, children and disability issues, and relevant reports and resolutions from United Nations treaty bodies, Inter-American human rights bodies, experts, and nongovernmental organizations.

Human Rights Watch sent letters to numerous government agencies regarding the concerns detailed in this report, including the Ministry of Social Development, the Ministry of Human Rights, the National Council of Prosecutors’ Offices, as well as Attorneys General and state and municipal authorities responsible for social assistance and the rights of people with disabilities in the four states where we did research. These agencies responded: the Ministry for Social Development, the National Council of Prosecutors’ Offices, the São Paulo Prosecutor’s Office, the São Paulo Municipal Secretariat of Social Assistance and Development , the Rio de Janeiro State Prosecutor’s Office Rio de Janeiro Municipal Secretary of Science, Technology, Innovation and Social Development, Foundation of Childhood and Adolescence. A full list of agencies and responses can be found in the annex to the online version of this report.
 

I. Background

Children and Adults in Institutions

According to official 2016 data of the National Secretariat of Social Assistance under the Ministry of Social Development, there are approximately 5,078 children with disabilities living in institutions.[2] However, there are flaws in Brazil’s collection of data on children living in institutions and these figures are likely to underestimate the total numbers.[3] As of December 2016, 5,037 adults with disabilities were in institutions and inclusive residences for persons with disabilities.[4]

Numbers and Types of Institutions

There are 2,998 institutions for children in Brazil, of which, 2,537 admit children with disabilities, including 35 institutions exclusively for children with disabilities.[5] There are two main types. Institutional shelters (abrigo institucionais) should house no more than 20 children with professional staff who work in shifts.[6] There are also smaller homes for children (casa-Lar), designed for a maximum of 10 children, and aim to simulate a family setting with a person known as an educator living full time in a house with the children. [7] There are 258 residential institutions for adults with disabilities in Brazil, including institutional shelters (abrigo) and inclusive residences.[8] In addition there are other types of facilities in the healthcare system where persons with disabilities, including children and older persons, live for extended periods.[9]

Judges determine the placement of children in institutions based on a petition from the Public Prosecutor’s Office, including upon a request from the Guardian Council for Children (Conselho Tutelar), to apply a protective measure in cases where a child is at risk or when his or her rights have been violated (abandonment, neglect or violence) and it is not possible for the family to provide care.[10] The Secretariat of Social Assistance at the state and municipal level and private organizations that run institutions are obligated to comply with judicial orders for each child.

Adults with disabilities often end up in institutions because they grow up in them beginning in childhood and then remain there or are transferred to an adult institution. An adult with a disability can also be placed in an institution by a relative or institution director who has guardianship over him or her, as described in more detail below.

State and municipal governments administer some institutions for people with disabilities, but most are privately run by non-profit organizations. Funding for institutions comes from various sources, including states and municipalities, religious groups, and private foundations, and individuals, including from foreign countries. According to 2016 data, 32 institutions for children with disabilities, a small number of the total institutions, received public funding, mainly from municipalities. Among institutions for adults, 201 received government funding.[11]

Harms of Institutionalization for Children

Numerous observational studies have demonstrated that placing children in institutional settings, irrespective of their material conditions, is detrimental to their emotional, cognitive, physical, and social development when care is provided focusing only on basic needs without a one-to-one relationship.[12] UNICEF has found that institutional environments can cause “developmental delays and irreversible psychological damage due to lack of consistent caregiver input, inadequate stimulation, lack of rehabilitation and poor nutrition.” Many children with disabilities require access to additional learning opportunities or specialized services like rehabilitation, which are often lacking in institutional settings.[13]

Child development specialists have found that the institutionalization of babies harms their early brain development and puts them at risk of attachment disorder, developmental delay, and neural atrophy.[14] For older children, the UN 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.”[15] 

Studies have shown that children moved from an institution into family-based environments demonstrated signs of improvement in their intellectual functioning, attachment patterns, reduced signs of emotional withdrawal, and reduced prevalence of mental health conditions.[16] One institution director in Brazil confirmed: “When a child from an institution goes back to the family or is adopted, you can see how development improves quickly, it’s visible.”[17]
 

II. Treatment and Conditions in Institutions

Human Rights Watch visited 19 institutions in Brazil in four states, including 11 institutions for adults with disabilities and 8 institutions for children, including 5 exclusively for children with disabilities.[18] All adult institutions also had children, and some of the specialized institutions for children with disabilities also housed adults.

Institutions ranged in size from 20 to 110 persons. Most institutions had approximately 30 to 50 people. In several institutions, Human Rights Watch documented abuses including ill-treatment, neglect, the use of restraints to control or punish residents, sedation, as well as inhumane and degrading conditions. Conditions and treatment were particularly abusive in the institutions we visited that had large numbers of people with high support requirements.

Many institution managers claimed that they did not have adequate staff to provide individualized attention to residents. For children, 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 attachment disorders. Most children with disabilities in institutions did not go to school. For those who did receive education, it was not meaningful to develop academic or life skills and took place primarily in segregated settings.

Most of the staff Human Rights Watch spoke with in institutions were highly committed and motivated to support persons with disabilities. They frequently emphasized that they were doing the best they could with the little resources they had. However, even well-intentioned staff often engage in unacceptable practices because they lack information, training, as well as resources, such as additional personnel, to help them care for large numbers of people, especially those requiring more intense forms of support.

People with disabilities have the right, on an equal basis with others, to be free of inhuman and degrading treatment as well as not to be subjected to forced medical treatment or restraints. Children enjoy this same right, as well as the right to education, play, and leisure.

Use of Restraints and Isolation

In eight of the 19 institutions that Human Rights Watch visited which held more than 50 residents, staff restrained adults and children in various ways. Staff restrained residents to bed rails with pieces of cloth bound around their waists or their wrists. In two institutions, Human Rights Watch saw how staff tightly bound socks or cloth around children’s hands to prevent them from putting their hands in their mouths or scratching themselves.

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In one institution, staff told Human Rights Watch that “at times we use straitjackets and placed people in an isolation room for them to calm down.” A nurse said, “Sometimes we … restrain them with sheets, or we use straitjackets for about 30 minutes while waiting for medication to take effect.”[19]

Staff at some facilities stated that they restrained individuals in order for them not to hurt themselves.[20] Staff in institutions Human Rights Watch visited in Brazil appear to rely on restraints because there are not enough personnel to allow them to give individuals the attention and support required to help them manage behavior that could be harmful.[21] Although the government has issued technical guidelines for staffing levels in institutions for children, they are non-binding. There are no guidelines for staffing for adult institutions (abrigos-institucionai).[22] In one institution in Rio de Janeiro only four staff members at a time provided direct support to 51 adult residents, all with high support needs.

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Restraint is never acceptable as a means of punishment or behavior control and it could amount to torture or ill-treatment. The special rapporteur on torture has stated that “any restraint on persons with disabilities for even a short period of time may constitute torture and ill-treatment.”[23]

The World Health Organization (WHO) has found that aggressiveness and unwanted behavior can often arise when individuals are constrained by the inherently rigid nature of the institution that does not give adequate attention to an individual’s will and requirements.[24] The WHO is designing programs to train staff to prevent situations that can escalate into aggressiveness, violence, and behavior that could result in self-harm. One key element is creating an institutional environment that recognizes individual needs and requirements and provides services in a timely and dignified manner. Other alternatives are designing individualized plans to understand and recognize triggers, early warnings, and tense situations.[25] The Brazilian government should move quickly to implement these types of measures while working towards deinstitutionalization.

Confinement to Beds and Rooms

Human Rights Watch visited eight institutions where residents remained in their beds or rooms continuously or for extended periods of time, including for meals. In five adult institutions, metal beds had tall metal bars to confine some residents with intellectual disabilities.  

Many people whom staff considered “severely disabled” (muito comprometidos), especially those who had multiple disabilities and could not move by themselves, remained almost continuously in their beds, lying down, doing nothing. At the time of Human Rights Watch’s visit to one institution, 32 residents, both children and adults, were all lying in their beds or cribs.[26] In one institution, a staff member confirmed that residents with high support needs lay down almost continuously, being brought out of bed and placed in a wheelchair only for short periods.[27] In one of the institutions Human Rights Watch visited in Rio de Janeiro, dozens of people with so-called “severe” disabilities were separated on the upper floor of the building. Up to eight people lived in small rooms, some of them restrained to metal bars of the bed by a cloth around their waists. A nurse in this institution said that people there “never leave the room.”[28]

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A specialized institution for persons with cerebral palsy in São Paulo had a ward for persons with high support requirements, where people lay in bed almost continuously, connected to oxygen tanks in the wall through tubes. According to one staff member, residents sat in wheelchairs for some hours during the mornings but had limited other activity. They never left the institution.[29] In Salvador, in one institution for 87 people, some people lay in bed constantly without stimulation or activity; another institution for 109 children had one room with children who similarly lay in beds continuously.[30]

In some institutions, most residents wore diapers and did not even get out of bed to use the toilet. A nurse in one institution told us, “All people who live in this ward use diapers.”[31] The parent of one resident told Human Rights Watch that she believed some residents, including her son, could use toilets if proper support was provided.[32]

Human Rights Watch observed that, except for wheelchairs in some cases, there were no other mobility devices like hoists or other instruments of any kind in any of the institutions visited to enable persons with physical disabilities to get out of their beds, much less to go out of the institution. Residents were not able to get up and walk without such assistance were completely dependent on the staff.

For example, Leonardo Barcellos, a 25-year-old with muscular dystrophy, was placed in an institution for people with high support needs when he was 15. He lived in one large room, along with 24 other men and women. He told Human Rights Watch that he spends large parts of his day in bed due to the lack of personnel to move him:

I am placed in the wheelchair in the morning, but then I have to be put back into my bed because I’m heavy, and there is no one to put me back again in the evenings. I miss my home and would want to live with my mother, but I understand she is getting older and wouldn’t be able to support me physically.[33]

In one institution in Salvador, an 18-year-old man with a progressive disability, which gradually compromised the muscles in his legs, had difficulty getting out of the room he shared with one other person. He did not have a wheelchair and moving on his own was extremely painful. Although the institution was located just 200 meters from the sea, he was unable to go to the beach and told Human Rights Watch that his dream was to “see the sea.”[34]

Inhumane and Degrading Conditions

Most of the large institutions had an impersonal and hospital-like or detention center-like environment. In some institutions, doors and windows had bars on them, giving them the appearance of detention centers. Conditions in institutions in Brazil that Human Rights Watch visited were often dehumanizing. In some cases, large numbers of unrelated adults or children were kept in rooms together, sometimes in severely crowded rooms of up to 32 people. In addition to being confined to the institution, many people remained in their rooms or beds for most or all of the day either because they were restrained to the beds or because staff did not provide support for people to leave their beds.

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Residents overwhelmingly had no privacy and had few or no personal items. In some cases, they even had to share clothes—and in one facility, even toothbrushes—with others. In some adult institutions staff did not assist residents to get dressed, leaving them unclothed from the waist down, wearing only diapers. Several institutions advertised tours for the public and solicited donations online relying on images of persons with disabilities as needy, vulnerable, and in need of care, rather than as autonomous individuals. In many of the institutions visited by Human Rights Watch, the problems described below created an inhumane and degrading living environment for residents.

Overcrowding and Lack of Privacy

Serious overcrowding was a problem in a number of institutions visited by Human Rights Watch. For example, in a Salvador institution for 109 children, one room held about 28 beds in four rows placed side by side with very little room to move between the rows and with no separation between beds to provide basic privacy. In one institution for adults 32 people lived in one room, again with beds placed directly next to each other. Some institutions had large wards with only small walls that separated groups of six to seven people. At least one staff member was constantly present. One of these overcrowded institutions had a bathroom where there were no doors or other means of privacy separating the toilets.

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In five institutions visited, people slept in rooms with nothing but a bed (or multiple beds) or a mattress on a concrete platform.[35] In one case people lay on mattresses on floors. The director of that facility claimed that the beds were being painted. Some slept on bare mattresses with no bottom sheet, but only a sheet to cover them. There was no other furniture that might be found in a bedroom, such as a bedside table, shelves for personal belongings, or dressers or bureaus for clothing.

In some institutions visited by Human Rights Watch, residents did not have any personal items.[36] In one institution a nurse told us, “We don’t have separate toothbrushes for each of them. They share.”[37] In some institutions staff stated that people living there were required to share clothes.[38] 

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International human rights law requires that all persons with disabilities be treated with dignity. Respecting the inherent dignity of persons with disability entails acknowledging them as persons on an equal basis with others and not as objects of treatment and care.[39] International law also establishes the right to privacy, including for people with disabilities on an equal basis with others. This applies regardless of their place of residence or living arrangements.[40]

Failure to Assist Adults with Dressing and Lack of Privacy When Changing Diapers

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Human Rights Watch visited seven institutions in all municipalities where staff did not support adults deemed to have “severe disabilities” to dress fully. As a result, these residents only wore clothes on the upper halves of their bodies, wearing nothing below the waist except a diaper. This is done for the convenience of staff members when changing peoples’ diapers. In addition, because beds are placed directly next to each other without any separation, staff changed residents’ diapers in full view of other adults.

Staff in one institution said that diapers were in short supply with only two diapers per adult or child per day. As a result, some residents had to remain in their own waste for long periods of time. Female residents in the same institution are not provided with sanitary pads for menstruation, “so we use diapers instead,” according to one nurse.[41]

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Human Rights Watch considers the failure to fully dress residents and the failure to ensure privacy when changing adult diapers to potentially rise to the level of degrading treatment.  The failure to provide women with sanitary pads for menstruation is dehumanizing.

Neglect and Lack of Meaningful Activities in Institutions

In all institutions that Human Rights Watch visited, children and adults with disabilities lacked sufficient personal attention and meaningful activities. Overwhelmingly, institution staff stated that they did not provide individual attention to residents, due to the large number of residents and lack of sufficient personnel to work directly with them. Staff said that they focused almost exclusively on basic care, such as feeding, toileting, and managing sleep routines, with time only for occasional leisure activities. Human Rights Watch’s observations in institutions confirmed few staff caring for large numbers of residents at one time, with little time except to meet residents’ basic needs. As noted above, lack of sufficient personal attention and consideration of individual needs can contribute to aggression, self-harm, and other undesirable behaviors.

A staff member in one of the institutions said that children there are deprived of personal contact. She said, “We cannot give them that. They need to be held, but we don’t have time to hold them.”  She continued:

The main [issue] is individualized care.… In many institutions, they only provide food and a bed. Kids don’t spend time playing. Caregivers are only concerned to give food and put them to sleep. There is no affection, no play. Life is not only eating and sleeping.[42]

In many institutions which Human Rights Watch visited, some or most residents, both adults and children, were just staring at whatever was in front of them without engaging in any activity. This was true in all 10 institutions for adults Human Rights Watch visited.

In one institution for example, which Human Rights Watch visited at noon, all 32 residents were sitting or lying down in a large, dark room doing nothing. Staff explained that they turned off the lights regularly because of the heat.

At the time of  Human Rights Watch’s visit to a special institution for children with disabilities in Rio de Janeiro in the middle of the day, all 12 children living there were lying in their cribs without anything to engage them. [43] In five institutions in Rio de Janeiro and São Paulo, staff placed children in front of the television to watch whatever program was on.[44] In one institution visited, dozens of children under the age of 10 were placed in front of a television for the entire time of Human Rights Watch’s four- hour visit.[45] 

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Some activities were organized within the institutions for children and adults, including by bringing in outside groups to provide entertainment.  For example, a group of volunteers dressed as clowns makes periodic visits to the institutions to entertain residents.

Staff in some residences said that they occasionally organize trips outside of the institution to the beach, the movies, and other activities. However, in some institutions these trips are rare and in others nonexistent.

One teenager with a physical disability living in a special institution for children with disabilities said:

The institution is stressful because it is noisy and boring. Often I have nothing to do when I'm not at school. I don’t have privacy or a space for myself. Special day trips are only organized during weekends, but the staff member in charge of taking us out had an accident and injured herself, so we are not currently going out at all.”[46]

The Convention on the Rights of the Child (CRC) establishes the right of children to engage in play and recreational activities appropriate to their age.[47] The CRPD establishes the right of children with disabilities to have equal access with other children to participation in play, recreation and leisure, and sporting activities.[48]

Institution Fundraising Based on Negative Stereotypes of People with Disabilities  

Many private institutions for persons with disabilities, including those visited by Human Rights Watch, promote tours and encourage donations. They advertise tours on their websites and through social media, such as Facebook. [49] One institution advertised tours for the public of up to five people twice a day; groups of over five people could be arranged on Saturday. Visitors can take photos and videos with authorization. The website tells visitors to take care when speaking with institution residents because they are “sensitive persons and that sometimes they fantasize.”[50]

Human Rights Watch also examined the websites of eight other institutions which had similar videos and appeals. The institution websites viewed by Human Rights Watch foster a negative image of persons with disabilities and perpetuate and reproduce stigmas by portraying institution residents as vulnerable and needy rather than as autonomous persons whose individual choices and inherent dignity must be respected.

The CRPD obligates governments to combat stereotypes, prejudice, and harmful practices relating to persons with disabilities, including by encouraging all organs of the media, as well as social media, to portray persons with disabilities in a manner consistent with the purpose of the CRPD.[51]  The CRPD committee has stressed, in numerous concluding observations regarding states compliance with the convention, that charitable campaigns that stereotype persons with disabilities as objects of charity are incompatible with the objective and purpose of the CRPD.[52]

Involuntary and Potentially Inappropriate Use of Psychoactive Medications

Although our research did not focus on inappropriate medication of people with disabilities living in institutions, we encountered several examples of residents whom the staff said were drugged to control their behavior. Staff at several institutions confirmed that they put residents on psychoactive medications without seeking their consent. The use of medications as chemical restraints to control residents’ behavior—for staff convenience or as punishment—violates international human rights standards.

In March 2017, Human Rights Watch researchers encountered a 19-year-old man with an intellectual disability lying motionless on a mattress in the middle of the day in a noisy institution. The institution’s director explained that staff had given him sedatives because he had bitten people.[53] She said that 12 of the 24 residents in the institution were on Risperdone, prescribed by a doctor, an antipsychotic medication that was developed to treat schizophrenia. Not all of the patients had schizophrenia. The facility had not sought informed consent from the residents for the use of the medications.[54]

Staff at several other institutions said that they use psychoactive medications to control resident behavior as well. A nurse in an adult institution stated, “If the residents misbehave they are given medication.”Another staff member in the same institution said, “In order to control them, we sedate them; some of them are given sleeping pills.”[55] In another adult institution, Human Rights Watch visited a ward with eight people, where medical staff said they gave medication to residents to “make them stable, to control crises, or to sedate them.” One staff member said, “If we don’t medicate them they become aggressive.”[56]

A rigid institutional routine, confinement, the lack of meaningful activities, and frequent lack of recognition of the individual will and preferences of residents in institutions can trigger aggressive behavior.[57]

While staff at institutions need to ensure that the environment in the facility is safe for residents and staff, drugging of residents for behavior control is not appropriate. Brazil should review its procedures for the use of psychoactive medications in institutions to ban their use as chemical restraints and ensure adequate oversight to enforce this ban.

Staff in most institutions visited stated that they regularly gave medicines to adults without their consent. In one institution in Rio de Janeiro, the director said, “We don’t ask for consent because these are persons who have severe disabilities. They don’t speak, they don’t think.”[58] For adults, medications should be delivered with the consent of the individual being treated. The CRPD Committee has held that treating an adult with medications without consent is a violation of the right to equal recognition before the law and an infringement of the right to personal integrity; freedom from torture and inhuman and degrading treatment; and freedom from violent exploitation and abuse.[59]

Informed consent can be achieved through supported-decision making. Brazil’s law on inclusion establishes a general framework to implement supported decision-making. It should be further developed by establishing accessibility measures and reasonable accommodation (plain language and alternative forms of communication) and advance directives in the appointment of one or more persons who will provide support chosen by the person concerned. See also, below, on Legal Capacity.

For children, consent should be given by the guardian, in consultation with the child, and used only for the therapeutic purposes and consistent with the right to the highest attainable standard of health.

Inadequate Education

Human Rights Watch found that education for persons with disabilities in the institutions we visited was limited. The majority of people with intellectual disabilities or who could not communicate received no education at all. Brazil’s 2016 Statute for People with Disabilities states that people with disabilities have the right to education and to be provided with support and reasonable accommodations without extra cost in regular schools regardless of where they live.[60]

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In four institutions visited in Rio de Janeiro for children and adults with disabilities, residents with intellectual disabilities and other disabilities which required high support, did not receive any education. In São Paulo, Human Rights Watch visited two institutions for children with disabilities with high support requirements; none of them received education. In an institution for 49 children and adults with intellectual and multiple disabilities in Ceilândia, one person was going to a regular school, the others had not received any schooling. In Bahia, Human Rights Watch visited an institution with 87 children and adults; none of whom received any education.[61] In a second large institution in Bahia of 109 children with disabilities, 37 children, either with autism or high support requirements, or both, did not receive any education.[62]  

The São Paulo’s Public Prosecutor’s Office’s inquiry in 2016 into 16 specialized institutions for children with disabilities in the municipality found that two-thirds of the institutions had no relationship with educational services..[63]

In the institutions visited by Human Rights Watch, only children whom the institution staff determine have some level of autonomy can attend school. Children with disabilities living in general institutions or who do not have intellectual disabilities are regularly sent to local mainstream schools in local communities. In some cases, children from institutions also attend special schools in the community that are exclusively for children with disabilities rather than in mainstream schools for all children. Some institutions provide children with intellectual or sensory disabilities special education programs within the institution, which has no official status as an educational facility. Children receive a certificate that is not an official diploma and would not allow an individual to continue his or her education elsewhere.

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Throughout the interviews Human Rights Watch conducted with institution staff and other government officials, there was a clear tendency to classify persons according to what staff believed was a child’s “level of disability,” which ranged from moderate to severe. According to staff, in most institutions visited and some policymakers interviewed by Human Rights Watch, those who were deemed to have “severe disabilities” (muito comprometidos) were considered not capable of being educated.[64] Alberto, a 52-year-old man with a physical disability, institutionalized for 40 years, said that he only completed first grade, “I have been living here since I was 12. I managed to study until first grade of primary school. I’m interested in studying physics.”[65]

Mariana, an 18-year-old blind woman, had been living in an institution since she was 12 and remained there as the institution was transformed into an inclusive residence. She told Human Rights Watch that she did not know how to read and write and only recently began learning to use braille at the Institute for the Blind in Bahia. She told Human Rights Watch that she wanted to work as a professor or as a physiotherapist.[66]

Clementina Bagno, member of the Guardian Council for Children (Conselho Tutelar) in Brasilia, confirmed that:

General education policies do not consider the requirements of people with disabilities who are living in institutions which leads to their exclusion and marginalization.[67]

The CRPD requires state parties to ensure the right of persons with disabilities to education without discrimination and on an equal basis with others through inclusive education at all levels: preschool, primary, secondary, and tertiary school, vocational training and lifelong learning, and extracurricular and social activities.[68] The CRPD prohibits excluding persons from the educational system on the basis of their so-called “level of disability.” No formal or informal evaluation should be made to determine if a child or an adult with a disability is capable of being educated in the general education system.[69] Any evaluation should have the purpose of assessing the specific requirements a person needs to fully support him or her in the general education system. The CRC also establishes the right of every child to education.[70] In its 2015 review of Brazil, the CRPD Committee expressed concern about children with disabilities being refused admission to schools or charged extra fees as well as the lack of reasonable accommodation and accessible school environments in the mainstream education system.[71]

An arbitrary determination that a child can or cannot benefit from educational services based on the alleged level of autonomy or disability constitutes discrimination. The state has the obligation to ensure that private persons, included nonprofit organizations, do not discriminate against persons with disabilities, including based on assumptions about their ability to be educated.[72]

“Muito Comprometido”? “Severe disability” has no definition

 

Throughout this research Human Rights Watch conducted in Brazil, public officials and institution staff consistently referred to people with certain types of disabilities or with multiple disabilities as having “severe disabilities” (muito comprometido). This was usually in reference to people who could not communicate, had difficulties understanding and self-functioning, had medical conditions that required intense support, or had multiple disabilities.

Many officials and institution staff seemed essentially to justify a lack of enjoyment of rights and services by certain people, based on this vague and essentially arbitrary concept of “severe disabilities.” The term as they applied it has no clear meaning, and instead seemed to represent a subjective and careless effort to create a category of people who can be stripped of their autonomy and rights. International human rights law protects all persons with disabilities, regardless of the so-called “level of impairment.”

Lack of Accessibility in Children’s Institutions

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Although children with disabilities are placed in institutions, including general institutions for children, for long periods of time, all three general children’s institutions visited by Human Rights Watch lacked an accessible physical environment for people with disabilities. In one institution in São Paulo, for example, stairs at the entrance made it impossible for a child with physical disability to enter or exit independently.[73] One institution in Salvador had only one bathroom with enough space for a wheelchair to fit, but it was in the girls’ section.[74] No bathroom in any general institution was fully accessible with toilets with raised toilet seats and support bars.

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According to the Technical Guidelines: Reception Services for Children and Adolescents in Brazil, institutions for children should be managed based on the principle of inclusion.[75] However, 2016 national survey shows that of the nearly 3,000 institutions for children and adolescents throughout Brazil, only 584 have accessible entrances, 767 are accessible in the bedrooms and spaces for common use, and 539 have accessible bathrooms.[76]
 

III. Prolonged and Life-Long Institutionalization for People with Disabilities

Staff members of different institutions, institution residents, and experts all told Human Rights Watch that children with disabilities whose families are unable to care for them are often placed in institutions for extended periods. Children with disabilities placed in institutions remain there longer than other children and often remain as adults, sometimes for their whole lives. Some institution staff told Human Rights Watch that children frequently lose contact with their families.[77] As the director of an institution for adults with disabilities in São Paulo, told Human Rights Watch people living in institutions “stay until they die.”[78] Some institution directors told Human Rights Watch that few residents ever leave the institutions once they have entered. An ongoing civil inquiry into conditions in 16 institutions in São Paulo by the local Public Prosecutor's Office confirms that few people leave institutions. In the last 10 years, just over 500 people left the 16 institutions; half due to death and 77 transfers to other institutions. In the remaining cases, children were adopted, or adults and children returned to their families.[79]

Adults with disabilities who are deprived of their legal capacity, or the right to make decisions for themselves, and placed in institutions on the basis of their disability against their will are victims of unlawful deprivation of liberty under the CRPD.

Human rights law recognizes the equal right of all persons with disabilities to live independently and be included in the community with the freedom to choose and control their lives. This right is founded on the core human rights principle that all human beings are born equal in dignity and rights and all life is of equal worth.[80] People with disabilities should not be isolated from society, such as in Brazil’s institutions.  

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The CRPD Committee has stated that the “systematic realization of the right to independent living in the community requires structural changes,” including phasing out institutionalization. The committee’s guidance states that “no new institutions may be built by States parties, nor may old institutions be renovated beyond the most urgent measures necessary to safeguard residents’ physical safety. Institutions should not be extended [and] new residents should not enter in place of those that leave.” In conjunction with deinstitutionalization, states must provide a range of individualized support services which allow for personal choice and self-control. The aim of these individualized support services is the realization of full inclusion of persons with disabilities in society and preventing isolation and segregation from others within the community.[81]

For children, Brazilian law states that placement of children in institutions can only be determined by a judge and should be an exceptional and temporary protective measure, only taken when a child’s rights are in danger and no alternative means to remedy the situation are available. A specialized judge on children determines the protective measures for the child. Placement in an institution should be reviewed every six months[82] and preferably should not go beyond 18 months.[83] However, this limit is not always respected, particularly for children with disabilities. One public defender in Rio de Janeiro told Human Rights Watch, “When it comes to children with disabilities, the [18 month] limit is just a general recommendation, it is often longer in reality.”[84] 

The CRC, CRPD, and the American Convention on Human Rights, to which Brazil is also a party, acknowledge that the family is the natural environment for the growth and well-being of all its members, particularly children, and including children with disabilities.[85] States should also ensure that children are not separated from their parents against their will unless that separation lies in the child’s “best interests.”[86] 

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.”[87] The CRPD states that a child should never be separated from his or her parents against their will except when a judicial authority determines that this is in the best interest of the child—and never on the basis of the child’s or a parent’s disability. When immediate families cannot care for a child with disabilities, states should “undertake every effort to provide alternative care with the wider family, and failing that, within the community in a family setting.”[88] 

Both the CRC and CRPD Committees have encouraged states to establish programs to move children with disabilities out of institutions, also known as deinstitutionalization, returning them to their biological or extended families or placing them in foster or adoptive care. This includes providing children and their families with adequate community-based supports, as described in more detail below.[89]

In its 2015 review of Brazil, the UN Committee on the Rights of Persons with Disabilities, the expert body which monitors implementation of the treaty, expressed its concern about the lack of access to support services, especially personal assistance services aimed at enabling persons with disabilities to live independently and be included in the community. The Committee called on Brazil to develop and implement a deinstitutionalization and community-based living strategy with clear time frames and benchmarks, in consultation with organizations of persons with disabilities.[90]

Children with Disabilities Remain in Institutions for Long Periods

According to the 2016 survey of institutions, more than 60 percent of children with disabilities in institutions have been living there for more than six years, compared to 5.7 percent of children without disabilities in institutions. For adults with disabilities, almost 62 percent have been in institutions for more than six years. [91]

Similarly, a 2008 study on children with disabilities in institutions in Rio de Janeiro found that children with disabilities typically live in institutions for long periods of time, including up to more than half of their lives. Children with disabilities do not participate in public life and have their social and family bonds broken or weakened.[92]   

Finally, a study carried out by order of the National Council of the Public Prosecutor’s Office in 2013 confirms that for children with disabilities, institutions are not fulfilling their objectives. Institutions are supposed to be provisional settings for children, but they become permanent homes for those with disabilities. The study shows that what was initially intended as provisional placement has transformed into confinement for children with disabilities.[93]

Entering as Children, Remaining as Adults

In seven institutions visited by Human Rights Watch, staff stated that there were adults with disabilities who had been in the institution since childhood. [94] For example, in one institution in São Paulo, at the time of Human Rights Watch’s visit in November 2016, 40 adults lived in the institution; most of whom arrived as children.[95] Another institution for children, also in São Paulo, houses people who remained even after reaching adulthood. In November 2016, two residents were children and eight were adults up to age 44.[96]

In one institution in Nova Friburgo, Human Rights Watch met a 70-year-old man who had been in the institution for 65 years.[97] In another institution in Rio de Janeiro, the director explained, “We now have 51 residents, most of them have been here since they were children. They have lost contact with loved ones outside the institution. Only approximately 10 percent of them receive family visits.”[98] 

In a different institution in Rio de Janeiro, a staff member described how Bernardo, a resident who had recently turned 18, would return to the institution. Pointing to an empty crib, the staff member told Human Rights Watch:

This is the crib of Bernardo, he turned 18 some weeks ago and went back [briefly] to his family. Nevertheless, some weeks from now he is going to return to the adult section of this institution. Bernardo family is unable to support him at home.[99]

An institution in Rio de Janeiro has 43 adult residents, all of whom grew up there. Nine children, ages 12 to 18, also live there. Similarly, most people in one institution in Rio de Janeiro are adults who arrived at the institution when they were children.[100] In Brasília, in an institution originally designed for children, a 28-year-old adult remained in after turning 18.[101] In an institution in Nova Friburgo, Human Rights Watch met a 70-year-old man who had been living there since he was 10 years old.[102] Again, most people living in that institution had arrived when they were children.

Antonia, a 50-year old woman with an intellectual disability, has lived in institutions since she was a child and has been relocated from one to another without her consent. She said:

Staff treats me well here, but I’d rather live with my family. My family is unable to care for me. I have lived in many [different] institutions during my life because some of them have closed. When they close one, I am sent to another institution.[103]

Antonia said that that the institution staff never consulted her about her relocation from one institution to another; they simply moved her to another institution without presenting any alternatives.[104]

Denial of Legal Capacity and Illegal Deprivation of Liberty

In all adult institutions visited in Brazil, institution directors or staff members told Human Rights Watch that nearly all people living there had been stripped of their legal capacity and were under the guardianship of another person, either the institution director or a relative. Institution directors said that individuals with disabilities had been placed in an institution without asking for their consent and was based solely on the consent of the guardian, who is either a family member or the director of the institution. The denial of the legal capacity of persons with disabilities in Brazil and their detention in institutions against their will, either without their consent or with the consent of someone making decisions on their behalf, constitutes an unlawful deprivation of liberty under the CRPD.[105]

Legal capacity is the right of persons to make choices about their lives, make legal decisions, and enter into binding contractual relations. Legal capacity affects all areas of life: from choosing where to live, whether and whom to marry, having children, signing an employment contract, or voting. Being recognized as someone who can make decisions is instrumental in taking control over one’s life and participating in society with others. Without it, an individual cannot exercise most human rights and his or her decisions have no legal force. The right to legal capacity is a cornerstone to enable people with disabilities to live independently and be included in the community.

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Under Brazilian law, people with disabilities can be stripped of their legal capacity at the request of an individual’s parents, legal guardian, spouse, or the director of an institution. Legal capacity can also be deprived by a prosecutor through a procedure in which a judge determines that the person is not capable of making decisions to administer his or her property or, if the case may be, carry out civil acts, and a guardian (curador or tutor) is appointed to make decisions on his or her behalf.[106] The CRPD states that persons with disabilities have the right to recognition everywhere as persons before the law, and that persons with disabilities should enjoy legal capacity on an equal basis with others in all aspects of life.[107]

The International Covenant on Civil and Political Rights, to which Brazil is a party, prohibits the unlawful deprivation of liberty. People with disabilities deprived of their legal capacity, living in institutions in Brazil, and prevented from leaving the institution are unlawfully detained under the CRPD. There is no way for a person deprived of legal capacity to challenge their placement because they do not have legal standing to challenge it. They can only do so with the consent of the guardian, who is the person who placed them in the institution.[108] For adult persons under guardianship and placed in institutions in Brazil, this decision is not periodically reviewed.[109]

In one institution in Rio de Janeiro visited by Human Rights Watch all 50 residents with physical, intellectual, and psychosocial disabilities were under the guardianship of the director. They had all entered institutions as children.[110] In a second institution visited in Rio de Janeiro, all 25 residents were under guardianship. One resident was under the guardianship of his mother, and the rest were under the institution director’s guardianship.[111] In São Paulo, Human Rights Watch visited one institution in which all eight adult residents with intellectual and physical disabilities living there were also under guardianship.[112]

In an institution in the Federal District, staff explained that the majority of residents living there were under guardianship; the director of the institution was the guardian of 26 residents.[113] In Bahia, Human Rights Watch visited an institution for 87 persons with intellectual and other disabilities, all of whom were under guardianship. Only five of the residents were allowed to manage their own money and all female residents were given contraceptives without their consent.[114] Human Rights Watch visited five inclusive residences and all residents were under guardianship.[115]

People in institutions under guardianship are not free to leave permanently or even go out for an outing without permission because guardians maintain full control over the person’s life, including where they live, where they go, and even with whom they speak. For example, Luciene Lima, a woman in her 50’s with cerebral palsy, lives in an institution in Rio de Janeiro. Lima shared a copy of her book, an autobiography detailing her life, which she wrote in the institution. As a girl, Lima had lived with her mother, who worked as a housekeeper. When Lima turned 12, her mother was unable to care for her and sent her to an institution. Her book describes her experience:

I used to question myself on why I had to live in an institution, unable to go to school like most children do. I even had the opportunity to go back with my mother for a little while. Extended family members and friends helped us find a house, …but expenses were high, and my mother started to get old [82 years] and was unable physically to provide support for me to get into bed, so after discussing it, we decided that I had to come back here.[116]

Although Lima participated in the decision to return to the institution, , the institution is now her guardian and staff there control her ability to leave institution, even for a short time. For example, when questioned about the possibility of a friend inviting Lima for dinner, a staff member said it was out of the question.[117]

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In another institution visited by Human Rights Watch, Carolina, 50, described feeling imprisoned in the institution where she had been for eight years due to the lack of opportunities to leave and live in the community. She acquired a physical disability following a severe beating by a family member which injured her back. Her sons placed her in the institution against her will because she had difficulty caring for herself. She wants to leave the institution but does not have anywhere to go. She said,

This place is very bad, it is like a prison. I don’t want to stay here. I’m obliged to be here. My sons don’t want to support me at home. … Although two of my sons come and visit me every two weeks, I never get to go out [anywhere]. I would like to go out, away from here, it’s my dream. When you come like this [with a disability], it’s over.[118]  

Institution staff in institutions visited by Human Rights Watch also maintain control over people’s schedules and personal choices. For example, Human Rights Watch asked one man, 29, with a physical disability who studies at a university, about his control over his routines in the institution. Regarding sleep, he said that he had no choice but to comply with the staff. “I have to go to bed when they tell me to,” he said.[119] Similarly, Human Rights Watch tried to independently interview adults with disabilities in this institution and one of the members of staff referred to adult residents as “children,” saying, “Why do you talk to the children themselves? They aren’t responsible for themselves, we are. You should talk to us, not them.”[120] In an institution in São Paulo, after Human Rights Watch spoke to two residents who agreed to an interview, the administrative director intervened and ended the conversation. She said, “They are people with disabilities you cannot consider everything they say as true.” She refused to acknowledge that the consent they had given to the interview as valid, saying only the institution director can give authorization.[121]

Steps to End Guardianship in Brazil

 

In 2015 Brazil adopted the Statute for Persons with Disabilities which established the rights of persons with disabilities to exercise their legal capacity on an equal basis with others. The law limited restriction of legal capacity only for financial transactions and business acts, but not for other decisions.[122] However, before the statute entered into force, parliament adopted a new civil procedure code which revoked these provisions. At the time of writing, the full guardianship system remains in place. However, Brazil’s Congress is considering a draft law to harmonize its legal framework, which would partially create supported decision-making mechanisms.[123] Supported decision-making is a system for those who want assistance in making decisions or communicating them to others.

The CRPD requires that states take appropriate measures to provide access to the support that persons with disabilities may need and want in order to exercise their rights and make important life decisions for themselves. Measures relating to support for the exercise of legal capacity should include appropriate safeguards to prevent abuse.[124] Support for persons with disabilities can take various forms and can include: accessibility measures and reasonable accommodation in understanding information and consequences of legal acts; provisions of advance directives; and the appointment of one or more support persons chosen by the person concerned. According to the CRPD Committee, in exceptional cases, when it is not possible to determine the will and preferences of the person, even after serious and sustainable efforts have been made, the best interpretation of will and preferences must replace any “best interest” determinations. This respects the rights, will, and preferences of the individual; the “best interests” principle is not a safeguard for adults which complies with the CRPD.[125]

 

Monitoring of Institutions

Human Rights Watch identified gaps in monitoring of institutions. Under Brazilian law, nonprofit organizations providing social services are registered with Municipal or Federal District Social Assistance Councils, including institutions such as shelters, homes and some medical facilities.[126] Social assistance institutions that provide services to children should be registered with Councils for Children.[127] Councils monitor and evaluate agencies providing social assistance and have the authority to visit institutions to evaluate their compliance with thechnical guidelines for operation.[128] The councils can suspend or cancel the registration of social assistance entities that fail to comply with technical guidelines and standards. All institutions registered with the Social Assistance Councils are required to submit annual reports to the council detailing their compliance with tehcnical rules for their operation to renew their registration.[129] Councils should publish annual reports.[130]

The chair of the Municipal Social Assistance Council in Salvador told Human Rights Watch that there are 298 institutions in Salvador, and the council has visited 65 percent of them in the last two years. Staffing limitations prohibited them from visiting more institutions. When the council finds an institution out of compliance with technical rules, it issues instructions for necessary changes. However, it is not consistently able to follow up on an institution’s actions on the recommendations, except by examining the institution’s mandatory annual self-reporting. Municipal councils cannot receive individual complaints regarding agencies delivering social services.[131]

For institutions for children, there is more regular monitoring. For children in institutions, judges are obliged to conduct periodic hearings to assess the situation of every child placed in the institution by judicial order to determine if the child should remain, be transferred into some other form of protective measure, or return to their family.[132] Public prosecutors’ offices are obligated to visit social assistance institutions for children, including for children with disabilities.[133] There are some institutions where children with disabilities live which operate as medical facilities and are not registered as institutions or homes for children and are not subject to the prosecutors’ mandatory review.[134]  Prosecutors also have the authority to monitor institutions for adults with disabilities, although there is no binding resolution obliging them to do so, only a recommendation from January 2018.[135]

Prosecutor’s offices have petitioned courts for the closure of or to intervene in institutions after identifying mismanagement and abuse.[136] In all states Human Rights Watch visited for this research, prosecutor’s offices have special units on the rights of persons with disabilities and on children’s rights.[137]

Complaint Mechanisms

The Public Prosecutor’s Offices in Brazil can also initiate investigations based on individual complaints. However, Human Rights Watch found that none of the institutions for adults and children with disabilities in institutions visited had visible information about complaint mechanisms and procedures and no individually tailored procedures to enable persons with disabilities to enter a complaint. For some people, their disability may hinder their ability to independently file a complaint to the Public Prosecutor’s Office or other agency under those agencies existing procedures. Some individuals may require assistance or accommodations to do so. Officials from Public Prosecutor’s Offices in Brasilia and São Paulo each confirmed that there are no accommodations available to ensure that persons with disabilities in shelters could file complaints, despite the fact that the 2016 law on inclusion requires the government to provide such accommodations.[138]

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Procedural accommodations entail individually tailored modifications to procedures to ensure persons with disabilities access to justice, on an equal basis with others, such as providing personal assistance, easy-to-read versions of texts, sign language interpretation, or documents in braille format.[139]

The lack of an accessible complaints mechanism creates a risk that human rights violations such as neglect, the use of restraints, sedation, or forced and unnecessary medication could occur without victims having the ability to report and seek protection. Persons with disabilities have the right to be informed about their rights and obligations under law through appropriate and accessible means, including how to file complaints and petitions.

Economic Factors that Contribute to Institutionalization

Institution managers, disability rights advocates, and parents told Human Rights Watch that for some families of children with disabilities, the lack of sufficient government support and accessible services for parents to raise their children at home was a factor in their decision to place their child in an institution, sometimes indefinitely. Human Rights Watch also documented some cases in which foster or adoptive families returned children to institutions; citing the lack of sufficient services to support them in raising the child. Services that children with disabilities and their families need include things like inclusive education in neighborhood schools, accessible day care centers, accessible transportation, medical care and relevant therapies as well as financial support to help families meet the specific needs of the child with a disability. 

A study by the National Council of the Public Prosecutor’s Office found that parents’ lack of material resources required to provide basic care needs, treatment, and health services for their children with disabilities is among the main reasons that parents are unable to raise their children at home and judges deciding to place them in institutions.[140] As described in more detail below, although the federal, state, and municipal authorities in Brazil have undertaken some steps to provide services and essential benefits to children with disabilities: authorities at all levels of government should look to expand and revise policies and programs to support children with disabilities to grow up with their families.

Celia Barcellos, a woman living in Rio de Janeiro, told Human Rights Watch that she wanted to raise her son, Leonardo, now 25, at home, but could not for financial reasons:

I suffered deeply when Leonardo had to be moved into the institution when he turned 15, but I had no other alternative. … The state doesn’t provide me with any support, and I am not entitled to receive the BPC because I earn more than the minimum wage. It has been very hard for us. Leonardo had to drop out from school because authorities said they were not able to provide assistance during the day, and that I had to stay with him during school hours if he wanted to continue studying. I have to work, and was unable to do that, so he only managed to finish the first year of high school.[141]

Other families described feeling that institutionalization might be their only option, despite their efforts to raise their child at home. Vilma, mother of a 13-year-old girl with spina bifida living in Salvador, told Human Rights Watch that she is worried that she may have no choice but to place her daughter in an institution in the future due to the lack of support services for her to raise her daughter at home. Vilmasaid that she could not work because she had to take care of her child full time, in the absence of services in the community, including an inclusive school:

The [state social payment] … is essential for me and my daughter. I manage to buy food, clothes and pay the rent, but it is not enough to provide for all of my daughter’s needs. My daughter needs a wheelchair and I am not able to buy it. A wheelchair was given to us, but it is not tailored to her needs. The footrests are too long for her legs.[142]

While in the institution, children may become isolated from their families which increases the potential that they will remain in institutions for long periods and perhaps into adulthood. One factor can be the cost of traveling to the institution. For example, Rita Barreto, director of an institution in Rio de Janeiro, well outside of the city center, said:

Although children have living parents, they do not come to visit because they live in other cities which are far away and cannot afford to pay for transport.[143]

Human Rights Watch interviewed parents of children with disabilities, who worried about their children’s future and lack of options other than placement in institutions. For example, Roseli, mother of João, a young adult with disabilities, told Human Rights Watch: “We are getting older. We don’t want them to go to an institution, so we are thinking of a way to secure their future, so they can live in the community when we are gone.”[144]

Children Returned to Institutions from Foster and Adoptive Care

Through interviews with some parents and institution staff, Human Rights Watch documented how some children with disabilities were returned to institutions after having been adopted or taken into foster families due to the lack of sufficient services in the communities for the families.

Alvaro told Human Rights Watch that he arrived at the institution when he was 10, was briefly adopted by a family, and then returned to the institution. Alvaro has a disability which causes progressive decline in sensory and motor function, particularly of the legs and feet. The lack of sufficient support for him and his family for him to live in the community contributed to his initial placement in and subsequent return to the institution. Alvaro said he never had a wheelchair and relied on others to help him move around. Due to the difficulty walking, he had to drop out of school.

According to the institution manager, although they wanted to support Alvaro to the greatest extent possible, they were not allowed to spend money on building infrastructure and thus could not build an accessible bathroom. Financial difficulties prevented them from buying him a wheelchair. As a result, Alvaro remained largely confined to his room.[145]

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In early 2017, Catarina adopted Teresa, a 6-year-old girl with an intellectual disability, from an institution in Rio de Janeiro. Catarina told Human Rights Watch that while in the institution, Teresa was only fed by tube; at home, she has started to eat orally. Teresa’s motor skills developed enormously, and she was able to move with ease. Teresa attended a local community school with other children her age. Despite these developments, after about six months Catarina felt compelled to return Teresa to the institution. According to the institution director, the major obstacle for Catarina was insufficient social services to support her in raising Teresa at home.[146]

This institution director confirmed a similar case. She told Human Rights Watch about a child with microcephaly who was placed in a foster care family, only to be returned to the institution almost immediately. The parent stated that it was too expensive and time intensive to care for him due to insufficient social supports.[147] The director of the Niteroi institution in Rio de Janeiro told Human Rights Watch that a 19-year-old man with an intellectual disability was briefly adopted as a child, but then returned back to the institution. The manager said that this man suffered serious emotional distress after being returned.[148]

 Janete Aparecida Giorgetti Valente, the manager of the foster family service program in Campinas, also indicated that social supports are not sufficient and that potential foster families “are not always available to support children with disabilities because they work and don’t have time to take care of a child’s special needs.”[149]

Francisca , 3, has a physical and an intellectual disability. She was adopted by a family in Rio de Janeiro in 2016. When the family adopted her, Francisca could not walk; in their care, she gradually started developing motor skills. Her mother, Flavia, said:

Francisca surprises my husband and I every day. The neurologist told us that she was not going to be able to do anything. But that has been proven to be false. She can now eat by herself instead of having to be fed with a syringe. … Her learning skills are developing fast, although motor skills could improve much more. She has exceeded all of our expectations.[150]

Neiva Correa Marins and Carlos Eduardo Cruz are a couple who adopted two girls with intellectual disabilities, Silvana and Sofia, ages 3 and 4, in 2016. Correa said:

Our daughters have made enormous progress. Silvana was not able to walk at all at the institution, but after six months of living with us, now she’s walking. It has everything to do with individualized support. Everyone was amazed when they saw Silvana return to visit friends at the institution and was walking. ‘I’m here! I’m walking,’ Silvana said to them.[151]

 

IV. Government Response

The government of Brazil has in place policies to help protect the rights of persons with disabilities. It is not within the scope of this report to detail all of them. This chapter focuses on the most relevant policies and programs the government can further develop to better ensure the rights of people with disabilities, including the right of children to grow up in a family, the right of people with disabilities to live independently in the community, and other rights.

Brazil’s Financial Crisis and Funding for Institutions

Brazil is currently facing a severe financial crisis that has resulted in budgetary shortfalls and cuts, including to many social services. The government relies almost exclusively on private institutions to house children and adults with disabilities. Most of these institutions, including those Human Rights Watch visited, are facing severe financial hardship. In some cases, where institutions have agreements with municipal or state authorities for funding, authorities have not delivered funds in a timely manner or stopped funding institutions for extended periods of time. In Rio de Janeiro, two institutions were forced to close in 2016, with 113 adults with disabilities who had to move to other institutions.[152] In other cases, institutions rely entirely on local or foreign donations without government support. The government has a responsibility to ensure conditions in all facilities authorized to operate by the government to guarantee the basic rights and human dignity of people with disabilities. These funding questions further highlight the practical problems of residential institutions for people with disabilities.

When moving away from residential care, governments should seek to reallocate resources currently devoted to institutions toward community-based services. The Office of the High Commissioner for Human Rights, UNICEF, some national governments that have pursued deinstitutionalization, and non-governmental organizations have found that services based in the community, rather than concentrated in residential institutions, and support to families are often no more expensive to run than an institutionalized system.[153]  During the period of moving from residential care to community-based living arrangements and services, there are likely to be additional costs due to the transition and the parallel existence of two systems.[154]  

Potential to Support Independent Living

Inclusive Residences

In 2009, the National Council for Social Assistance started a program called “inclusive residences,”[155] which are designed to provide personalized care in small groups for people with disabilities who are unable to care for themselves without support and have no family assistance, or who are in the process of leaving institutions.[156] The municipal social assistance authority identifies people who are eligible to live in one of the residences. The residences should house no more than 10 adults with disabilities. Inclusive residences can include both men and women and can have diverse types of disabilities. Services such as healthcare and education should be provided in the community and not within the residence.[157] As of December 2016, there were 155 inclusive residences in Brazil.[158]

The stated purpose of inclusive residences is to end segregation and promote community living, shifting the paradigm from isolation and discrimination embodied in institutional settings for people with disabilities. It aims to foster peoples’ autonomy and strengthen their ties with their families and society.[159] This program envisions that institution and residential services in Brazil needed to be restructured through the establishment of new modalities of care to move away from large – scale institutions and group residential establishments for long periods (orphanages, boarding schools, educational establishments, homes, among others).[160] These services should operate within a unit embedded in the community and include residential characteristics, a comfortable and safe environment, and adequate physical infrastructure.[161]

Unrealized Potential of Inclusive Residences

Human Rights Watch visited four inclusive residences in São Paulo and one in Salvador, which were home mainly to people with intellectual disabilities as well as a few people with physical disabilities and one woman who is blind. In the residences visited, Human Rights Watch researchers observed more personalized care, and some residents work or have more opportunities to participate in society than people living in larger institutions.  All of the residences visited by Human Rights Watch were newly built houses located in communities. The homes were clean, well-organized, and some residents participated in household tasks. The staff was professional and appeared to provide quality services and more personalized attention to residents. Some residents work, study, or have other opportunities to participate in society.

Despite their smaller size and newness, the five inclusive residences which Human Rights Watch visited in Brazil have the character of institutions. People typically have little privacy; little control over their lives, including daily routines of eating and sleeping, romantic relationships, as well as how to spend their own money. They have few opportunities to make decisions independently, including whether or not to live in the inclusive residence in the first place. The director of one residence confirmed that “inclusive residences are smaller institutions but with a different name.”[162]

According to the CRPD committee and the UN’s Office of the High Commissioner for Human Rights, the most prominent characteristics of an institution include: the lack of control over day-to-day decisions; rigidity of routine, irrespective of personal preferences or needs; identical activities in the same place for a group of persons under a central authority; paternalistic approach to the provision of services; and supervision of living arrangements without consent.[163] 

Human Rights Watch found that the five inclusive residences we visited in Brazil made some attempts to promote autonomy and life-skills for some residents but fell short of facilitating meaningful independence. For example, Francisco, a 19-year old with an intellectual disability, said he worked at a fast food restaurant as a janitor and earned his own money. He liked living at the residence. However, he had to ask permission to leave the residence to do activities, which staff members sometimes refused. “It is like having a mother,” he said.[164] Francisco longed for a more independent life, which he felt he could manage with support:

I believe we should have more freedom, I dream of starting my own business, marrying, and having a family of my own. I might need support to do this, but I’m sure I can handle it.[165]

A woman in one residence told us she had a boyfriend at a nearby residence and that she longed to get married, but the staff of the residence did not allow her to see him on her own. She said:

I have a boyfriend who lives at the residence for men. He is now 32 years old. I would like to marry him, but I’m only allowed to visit him on weekends when someone takes me to where he is. I am not allowed to go by myself because [the staff says] would be dangerous [to travel alone].[166]

In one residence, residents were allowed to have their own bank accounts, but residence staff managed the money and gave money to residents only according to what the staff deemed as reasonable.[167]

Despite the spirit of the inclusive residences policy, Human Rights Watch observed that staff in two of the five residences visited did not appear to be supporting residents’ autonomy and equality. Although all of the residents are adults, staff typically refered to them as children, calling them boys or girls (meninos/meninas). They encourage residents to call visitors “auntie” or “uncle,” connoting an adult-child relationship.[168] 

Persons with disabilities who live in inclusive residences do not have a say as to whether or not they want to live there. As a result, they are denied the right to decide where and with whom to live, on an equal basis with others. The manager of one residence explained that the head of the municipal social assistance department decides where to place people based on existing vacancies.[169]  As such, persons are placed in an inclusive residence without expressly giving their consent.

The inclusive residence program has the potential to facilitate persons with disabilities currently in institutional care to gain skills and autonomy necessary to move out of institutions, live independently, and exercise control over their own lives. However, they should not be seen as a complete and adequate solution in and of themselves. The CRPD Committee has repeatedly said that small homes, like Brazil’s inclusive residences, are still an institutional form of services, which segregates people with disabilities and limits personal autonomy and cannot be conflated with independent living arrangements.[170] Independent living means that individuals with disabilities are enabled to make all decisions that concern their lives, including deciding one’s place of residence, daily routine, personal relationships, clothing, nutrition, hygiene and health care, religion, culture, and sexual or reproductive rights.[171] The right to live independently and be included in the community should not depend on the level of support a person with a disability needs.[172] Institutions, large or small, restrict persons with disabilities from exercising control over their lives.[173]

Other countries have good practices as alternatives to institutions that could be taken as examples for how to ensure people with disabilities can live independently and make choices on an equal basis with others with support as necessary. For example, the Croatian government secured apartments for some persons with intellectual and psychosocial disabilities who previously lived in institutions and gave them the option of living in the apartments with support in managing daily tasks if needed. Similar programs, one run by the government and two by non-governmental organizations in Kazakhstan, support 60 people with intellectual, developmental, and psychosocial disabilities to live in apartments or houses.[174]

The Ministry of Development in Brazil should consider reforms to the inclusive residences program to ensure the residences serve as transitional homes with the goal of facilitating people’s genuine autonomy and independent living rather than simply a smaller institution. Authorities should take steps to design and ensure a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community.

Youth Republics

Brazil has a system of small residences, known as youth republics, for young adults between 18 and 21 years old who have aged out of institutions for children, designed to develop life skills and promote autonomy. They are organized in groups of up to six men or women in an apartment, supervised by professional staff who manage the household and support young people in accessing social assistance. Young people in this system are encouraged to find a job and gradually start living independently.[175] Claudia Vidigal, a former head of the National Secretariat for Children and Adolescents (CONANDA), told Human Rights Watch that currently these programs are not accessible for young persons with disabilities. The apartment buildings and apartments are not physically accessible, and the state does not provide reasonable accommodations to people with disabilities, such as personal assistants.[176] Brazilian authorities should look for opportunities to include young people with disabilities who age out of children’s institutions to be included in youth republics as a means of supporting their independent living on an equal basis with others.

Government Social Benefits Relevant for People with Disabilities

Brazil provides direct financial benefits to persons with disabilities, as well as social services that include institutions as well as community-based services such as day care centers and medical care. Services can be delivered by municipal, state and federal authorities and nonprofit organizations. The types and quality of services can be highly variable as they are dependent on the financial resources available at each of these levels of government. 

Social Services

In Brazil social assistance is organized as a decentralized system that comprises all levels of government (federal, state, the federal district, and municipal) known as the Unified Social Assistance System (SUAS). SUAS is designed to coordinate management, financing, and technical assistance at different levels of government. It also develops a network of public and private services, programs, and projects. SUAS also has the mandate to monitor and evaluate social assistance programs. [177]

The social assistance system provides two types of services: basic and special social protection. Basic social protection is a set of services, projects, and benefits of social assistance to try to prevent situations of vulnerability and social risk as well as to build and strengthen family and community bonds.[178] Special social protection is the set of services, programs, and projects to support individuals and families who are in vulnerable situations or whose rights have been violated.[179] State agencies responsible for social services collaborate with nonprofit, nongovernmental organizations to deliver services, such as day care services or home visits by doctors and make referrals to networks of social services, such as health, education, social protection, and other programs. Municipal level departments of health, education, development, and others also provide services for persons with disabilities. According to one official in Campinas, a relatively wealthy municipality, services provided by the municipality can include mobility devices or sign language interpreters.[180]

The Ministry of Social Development has put in place services for persons with disabilities, such as day care centers, to provide services to combat isolation, confinement, discriminatory barriers, and neglect.

From 2011 to 2014, the national program Viver sem Limite (Live without Limits) supported improved protection of the rights of persons with disabilities in four areas: access to education, social inclusion, access to health, and accessibility.[181] There have been no similar national programs since 2014. In October 2017, Brazil’s federal accountability office, (Tribunal de Contas da União (TCU)), made a recommendation to the Ministry of Human Rights to create a permanent policy for the protection of the rights of persons with disabilities because no other federal program had been launched since the end of Viver sem Limite.[182]

Financial Benefits

Brazil has two kinds of financial benefits available to persons with disabilities: “Benefício de Prestação Continuada” (BPC, or Continuous Benefit) and Bolsa Família, which is not exclusively for persons with disabilities, but designed to alleviate poverty. Both are administered by the federal government. Bolsa Família is a program begun in 2003 designed to combat poverty and social inequality in Brazil. It is a financial benefit that is directly transferred by the federal government to families.[183] According to official data 14 million Brazilian families are benefitting from the program.[184]

The BPC is a monthly pension, guaranteed under Brazil’s constitution, equivalent to the federal monthly minimum wage of R954 (about $259).[185] The BPC is given to the person with disability or the family (spouse, partner, parents, stepparents, unmarried siblings, sons, and daughters) in the same household. The BPC is only available for people whose total household income is less than one-fourth of the minimum wage per person, or less than R$220 ($64.50), per month.[186] Parents of children with disabilities who work and earn more than this are not eligible for the BPC. The BPC can be combined with the Bolsa Família benefit, medical assistance, or other monthly pension, such as retirement or widow’s pension.[187] In addition, states and municipalities administer benefícios eventuais (one-time benefits), which can be provided to individuals and families that face birth, death, temporary vulnerability, or natural disaster.

All persons with disabilities in institutions, irrespective of their family’s income, if they meet all the other requirements established in the BPC bylaw, are eligible to receive this benefit. Human Rights Watch found that some persons with disabilities living in the institutions visited, including children, were registered to receive the BPC.

When a person is in an institution and deprived of legal capacity, the BPC is usually managed by the institution director, as the person’s guardian. In its ongoing civil inquiry, the São Paulo Prosecutor’s Office identified concerns about the lack of transparency and accountability for BPC management in institutions in São Paulo. There is no oversight on how institutional residences use the BPC funds they collect on behalf of residents.[188] Directors of some residential institutions told Human Rights Watch that they use the BPC to provide for the individual needs of the person receiving the BPC, as well as for the institution.[189]

According to a 2011 study of children in institutions in Rio de Janeiro, only 9.8 percent of children in specific institutions for children with disabilities and 6.6 percent of those who are in general institutions, received the BPC. The municipal Reference Center for Social Assistance (Centro de Referência de Assistência Social, or CRAS) has the mandate to provide information to families and individuals, including in institutions, about the BPC and how to obtain it.[190]

As noted above, families and staff interviewed by Human Rights Watch noted that financial difficulties are often a significant factor leading to institutionalization of children. Families who did not qualify for the BPC, use their own money to pay for services, including by sometimes relying on extended family. For example, in Rio de Janeiro, Luciana, mother of a 20-year-old woman who has a genetic brain condition, told us that doctors predicted her daughter would not be able to read and write. But she now can, thanks to treatment that her parents and other relatives sought out and paid for. Luciana said:

Since she was a baby she received a lot of attention and interaction, and her success depended on early stimulation. But, of course, she comes from a privileged social class, and I was able to give her all the support needed to make sure she succeeded. Poor families cannot treat…a person like my daughter without state support.[191]

Education is another area in which parents identified insufficient support for their children in the regular school system and often paid for additional therapies privately. Other parents felt that private school was the only option for their child due to the lack of meaningful inclusive education. Neiva Correa Marins and Carlos Eduardo Cruz had adopted two girls with intellectual disabilities but were not eligible to receive the BPC because their combined income is above minimum wage. Marins told Human Rights Watch:

Since we adopted Silvana she has made enormous progress, but she needs additional support at school, such as speech therapy. The state only provides one session of speech therapy a week, which is clearly not enough, so we pay for an additional session with our own money.[192]

Raquel Terra, who works as a speech therapist in a daycare center in Rio de Janeiro, also noted that families of children with disabilities faced economic difficulties acquiring essential mobility equipment. As a result, some families had to accept one-size-fits-all wheelchairs that “are not appropriate for them.”[193]

Family Based Care Alternatives

Foster Care

Alternatives to institutional care for children are developing in Brazil slowly. Foster families are a form of care which takes place within the home of a family. Before being appointed as a foster family, candidates undergo training with a technical team. A judge awards provisional custody of the child to a foster family. Foster family care is temporary and must be evaluated periodically prioritizing reintegration with the biological family and, when this is not possible, identifying a long-term solution for a child. Under Brazilian law, foster families cannot become adoptive families.[194] A foster family can only care for one child, or up to three siblings. For more than three siblings, children are placed in institutions.[195]

As of November 2016, 1,107 children in Brazil lived in foster families.[196] According to Isabel Penteado, head of the NGO Fazendo História, one of the leading organizations promoting foster care in São Paulo, only a small percentage of children who could benefit from foster care do.[197] In addition, even most successful programs do not currently include children with disabilities.

Human Rights Watch visited Campinas, a municipality about 100 kilometers from São Paulo, which has implemented one of the most successful programs of alternative care in the country.[198] In March 2017, Campinas municipality had 23 children in foster care (compared to 379 children in institutions).[199] However, currently, none of the children in the foster care program have disabilities.

Janete Aparecida Giorgetti Valente, municipal secretary for social assistance in Campinas and in charge of the alternative care program, said that the foster family program was open to everyone, including children with disabilities. She explained:

The state policy is to include children with disabilities in the foster care program, even with supplementary resources. A family receives one minimum-wage salary to support the child, but if the child has a disability, the family receives an extra amount of money to support him or her (a third of a minimum salary, regardless of the support requirements of the child).[200]

Families who want to participate in the foster care program in Campinas must attend a two to three-month training session and undergo different evaluations, including psychosocial tests and an overview of family and social networks. According to Valente, the training includes a special module about children with disabilities, but it is short and limited in scope. [201] 

Human Rights Watch tried to contact foster care programs in Rio de Janeiro and Salvador but implementing authorities in Rio de Janeiro did not respond and authorities in Salvador declined the visit because they were in the process of initiating a foster care program.

Adoption

An adoption system exists in Brazil, yet despite ongoing efforts, children with disabilities are rarely adopted.[202] For children with disabilities, judges in the children’s branch of the judiciary are obligated to carry out an active search to place children with adoptive parents. As of January 30, 2018, the Council of the Judiciary’s adoption registry recorded 40,058 children available for adoption, and 40,831 candidates registered to adopt. Of 7,271 children that were adopted in Brazil between 2013 and 2018, only 8 percent had a disability or “illness.”[203]

According to the Council of the Judiciary’s register on adoption, most adoptive families are only willing to adopt children without disabilities. Of the total number of candidates (40,831), almost 64 percent said that they will not accept children with disabilities or other health conditions. Six percent (2,560 candidates) stated a willingness to adopt children with physical disabilities, and just 3 percent (1,374 candidates) would adopt a child with psychosocial disabilities.[204]

Brazil’s 1990 Statute for Children and Adolescents requires that children with disabilities be prioritized for adoption and requires the state to build awareness-raising campaigns specifically targeted to promote adoption to children with disabilities. [205]  

Law for Inclusion of Persons with Disabilities

The 2016 Law for Inclusion of Persons with Disabilities harmonizes Brazil’s domestic legislation with the Convention on the Rights of Persons with Disabilities (CRPD), which Brazil ratified in August 2008.[206] The law incorporates the core principles of the human rights-based model of disability and includes a specific definition of indirect discrimination. To ensure that persons with disabilities can exercise their rights, the law includes provisions on legal capacity, accessibility, political participation, and inclusive education.

The law also includes a provision that establishes a specific monetary benefit for persons with disabilities to live and be included in the community when they were previously receiving the BPC and start working. The government has a two-year period to implement it, which ends in June 2018.[207] The law mentions children with disabilities only once (to establish the right to special protection) and fails to provide more detailed provisions on their behalf, including specific reference to the right of children with disabilities to grow up in a family.  
 

Recommendations

To the Government of Brazil

While some of these recommendations should be implemented by individual authorities or government agencies, overwhelmingly these recommendations can only be implemented through meaningful inter-agency coordination at the federal level, as well as with states and municipalities. The government of Brazil should establish an inter-agency working group to address the short-term and long-term policy actions and other changes necessary to ensure the rights of children and adults with disabilities in Brazil.

Protect the Rights of Adults and Children Who Remain in Institutions Pending Full Deinstitutionalization

End the use of physical restraints and psychiatric drugs as means of controlling or disciplining persons with disabilities or for the convenience of staff, especially children. Instead, train staff in alternative methods and skills to de-escalate behavior;
Examine ways to guarantee the privacy of people in institutions, especially for older children and adults;
Take steps to ensure that all children in institutions participate in inclusive education in mainstream schools;
Ensure that state, municipal, and private institutions have sufficient staff to provide services to children and adults with disabilities, including nutrition, health, leisure activities, and training to prepare residents for independent life;
Establish mandatory periodic monitoring by the Public Prosecutor’s Office to perform periodic visits to institutions for adults;
Ensure accessible mechanisms for children and adults with disabilities in state institutions to report abuse without risk of retaliation. This includes informing people, including children, in an accessible manner about their rights. Ensure individually tailored adjustments and accommodations to individuals to access complaint mechanisms and review processes, in line with article 13 of the CRPD;
Ensure complaints are reviewed and addressed promptly and impartially;
Ensure all persons with disabilities living in institutions who are eligible to receive the BPC receive it and can manage this benefit themselves with appropriate support and oversight mechanisms.

 

Establish a Time-Bound Plan for Deinstitutionalization

Brazil should develop a time-bound plan to phase out the use of residential institutions for children and adults and develop community-based services for individuals with disabilities and families of children with disabilities. This should include efforts to reallocate expenditures and other government programming away from support to institutions and toward increased support to people with disabilities to live independently in their communities and for families to raise children with disabilities at home.
Ensure that persons with disabilities, disabled persons organizations, relevant non-governmental organizations, the Public Prosecutor’s Office, and the Public Defender’s Office are invited to participate in the formation of this plan;
Mandate that no funding provided by the Unified Social Assistance System is spent on building new institutions, major renovation projects for existing institutions, and renewing and funding new partnerships with residential institutions run by NGOs, private individuals, and corporations, or local and regional governments. The government should look to cooperate with private entities and local governments to develop and sustain community-based services;
For children, develop and sufficiently support family outreach programs to help prevent separation of a child from his or her birth family;
Ensure effective implementation of the existing policy giving priority to alternative family-based care, for children who cannot remain with their birth families, including placement in extended family, foster, and adoptive families where necessary;
Children should not be placed in residential institutions, except when other alternatives are not available or to prevent the separation of siblings, and for a limited duration, and with planned goal of family reunification or placement in other appropriate long-term alternative care as the ultimate outcome for the child.

Infants and children up to age three should not be placed in institutions, but in family settings such as emergency foster care.

When looking to move children and adults out of institutions, ensure the implementation of individual plans for each person’s exit, including a plan for any community-based support and services they might need. Individual plans should be timely and acted upon in a reasonable timeframe, lest they become obsolete. Ensure long-term case worker involvement and regular monitoring of implementation of individual plans;
Train staff to consult with all children with disabilities living in institutions regarding their futures before they turn 18; children should not be automatically transferred to institutions for adults;
Include children with disabilities in the youth republic institutions or other programs designed to facilitate children’s transition from institutional life to independent living;
For adults with disabilities currently living institutions, progressively integrate them into the community and develop services and systems to ensure their independent living, as detailed below;
Provide guidance and training to states and municipalities, institutions, daycare centers, and private actors concerning the roles they will play in the deinstitutionalization process;
When necessary, draw upon the experiences of other countries that have undergone de-institutionalization.

 

Develop Strategies to Ensure Children with Disabilities Live in Families by Strengthening Support to Birth, Foster, and Adoptive Families

Develop emergency family foster care programs, in particular for infants and other young children, as alternatives to placement in residential institutions;
Support and strengthen birth families of children currently placed in institutions or foster care with the aim of reuniting the child with her or his birth family;
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;
Ensure focused material, financial, psychological, and other supports to all families (birth, foster, and 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.

Expand and Develop, Where Necessary, Community-Based Services for People with Disabilities and for Families with Children with Disabilities

Develop Support Services for Children and Adults with Disabilities to Live in the Community

Ensure all families and persons with disabilities who qualify for the BPC receive it;
In addition to the BPC benefit, ensure quality, accessible services for independent living for children and adults with disabilities according to their individual requirements, including personal assistance services as well as targeted services based on the specific needs of the induvial;
Ensure that individuals are fully informed of available options and provide assistance as necessary in decision-making;
Re-allocate existing budgets away from residential care, including in partnerships with NGOs and private actors;
Create a body of persons with disabilities and other experts to monitor and assess the effectiveness of community-based support services and incorporate their conclusions into future policies.

Revise and Expand the Inclusive Residences Program

Building on the positive direction of the inclusive residences program, revise the program to ensure inclusive residences increase autonomous living skills of persons with disabilities with a view toward promoting independent living outside of an institution. Inclusive residences should:

Ensure that persons with disabilities live in inclusive residences based on their free and informed consent;
Ensure that all inclusive residences are accessible and people are provided with reasonable accommodation;
Ensure all persons with disabilities living in inclusive residences are consulted in all matters concerning the management of the residency;
Develop a broad array of independent living skills for residents, including:

nutrition, meal planning, and cooking
personal health and hygiene
employment opportunities, including outside of the residence
banking, bill paying, and managing household finances
identifying and selecting housing
housekeeping
relationship-building and choosing a spouse
family planning
parenting

Allow residents to leave the residence if they so choose; provide support when asked for the person concerned;
Reinstate legal capacity to residents who have been stripped of it. Create mechanisms to ensure supported decision-making for residents who ask for it;
Establish rights-based training programs for staff managing inclusive residences.

Improve Access to Quality, Inclusive Education for Persons with Disabilities

In line with the Law on Inclusion, guarantee children with disabilities an inclusive, quality education, including all children living in institutions through the following measures:

Strengthen inclusive education curricula and training standards for teachers who work with children with various disabilities and train teachers;
Ensure reasonable accommodations for children with disabilities to receive a quality, inclusive education in mainstream schools in their neighborhoods in line with the CRPD standards, including General Comment no. 4 on the right to inclusive education;
Take steps to integrate into education as far as possible the latest advances in assistive technology devices.
Develop awareness raising campaigns among institution staff, mainstream school administrators, teachers, and other school staff, as well as among children without disabilities and their parents, on the rights, dignity, and potential of children with disabilities, including the right to freedom from discrimination of any kind;
Ensure that staff of institutions never consider a child as incapable of education, and do not deny any child the right to pursue their education;

Ensure that pre-school age children with disabilities have access to preschool and child care centers on an equal basis as others.

Ensure Access to Quality Healthcare for Persons with Disabilities

Require that medical treatment is undertaken only with free and informed consent of the person receiving the treatment by providing them with the support they might need to give informed consent.  Any forced medical intervention should be strictly limited to emergency situations when a person’s life is exposed to imminent threat or a condition of similar gravity and lasting only until the condition has subsided.

Legal Reforms

Ensure that reforms to the Civil Code and Civil Procedure Code

Recognize full legal capacity to all adult persons with disabilities on an equal basis with others, regardless of the nature of their impairment, repealing any provision that perpetuates the system of substituted decision-making and develop a supported decision-making model that upholds the autonomy, will, and preferences of persons with disabilities;
Harmonize the Brazilian Law for Inclusion, the Civil Code, and Civil Procedure Code to create a system in which persons with disabilities are supported in decision-making, if required and asked for by them, rather than deprived of their legal capacity. Ensure that any legislative measures regarding legal capacity apply equally to the general population in Brazil and not on the basis of disability;
Pending implementation of legal capacity reform, undertake the following steps to ensure the rights of persons with disabilities:
Train public defenders to represent people with disabilities in legal proceedings regarding legal capacity;
Reform the Law for Inclusion to ensure access to support services and personal assistance based on people’s requirements, and irrespective of their employment status, and provide services based on all available resources.

Improve Data Collection and Publication

Collect and publish disaggregated data on the number of people with disabilities, disaggregated by disability-type and other demographic markers such as age, gender, ethnicity, location, and place of residence, including residential institutions. Accurate data is important to the development of efficient and effective policies, plans, and programs;
Ensure mechanisms for data sharing, exchange, and harmonization of data between different agencies.

To the United Nations CRPD Committee

Critically assess Brazil’s improvements on the implementation of article 19 of the CRPD, the right to live in the community, as well as articles 7, 12, 24, and 25 in in its follow-up review to Brazil and make positive recommendations on how to address problems identified in this report.

To the Inter-American Commission on Human Rights

Conduct a public hearing on the situation of children and adults with disabilities living in institutions in Brazil;
Conduct a special study throughout Brazil to assess the situation of children and adults living in institutions and gather disaggregated data on the number of people with disabilities other information relevant to implement the de-institutionalization plan.

 

Acknowledgments

This report was researched and written by Carlos Ríos-Espinosa, senior researcher in the Disability Rights Division. César Muñoz, senior researcher in the Americas Division, conducted interviews for the report. Andrea Carvalho and Natalya Jeronimo, consultants in the Americas Division, provided research support.

Jane Buchanan, deputy director in the Disability Rights Division, and Shantha Rau Barriga, director, edited the report. Emina Ćerimović, researcher in the Disability Rights Division, conducted research in Brazil and reviewed the report. Danielle Haas, senior editor in the program office edited initial versions of this report. Maria Laura Canineu, Brazil Director of Human Rights Watch, Daniel Wilkinson, managing director of the Americas Division, Diederik Lohman, director of the Health and Human Rights Division, and Kriti Sharma, researcher in the Disability Rights Division, reviewed the report. Christopher Albin-Lackey, senior legal advisor, provided legal review. Iain Levine, Deputy Executive Director for Program, provided program review.

Stephanie Collins, associate, provided editorial and production assistance. The report was prepared for publication by Fitzroy Hopkins, production manager.

We are grateful to the individuals who shared their personal stores, as well as officials, service providers, and experts who agreed to be interviewed, among them Ms. Stella Reicher and Ms. Rita Barreto. We thank all of the organizations that supported this work, facilitated interviews, and provided invaluable insight. Special thanks to Luis Rodríguez-Martinez who provided support to Carlos Ríos-Espinosa throughout the research and took most of the photos for this report. 

 

 

[1] Unified Social Assistance System (SUAS) Census 2016 [Censo SUAS 2016], National Results, http://aplicacoes.mds.gov.br/snas/vigilancia/index2.php (accessed November 1, 2017), p. 7.

[2] SUAS Census 2016.

[3] This data is based on a questionnaire sent to institutions registered with the government, which staff complete and return to the secretariat. Not all institutions respond to the questionnaire. In analyzing the 2016 data, Human Rights Watch found that disaggregated data according to type of disability was not consistent with general totals reported, indicating that the definitions or instructions related to the questionnaire were possibly not sufficiently clear or precise. SUAS Census 2016.

[4] In addition, the study identified 32,877 older people with disabilities living in institutions for the elderly. It was not within the scope of this research to examine this topic. SUAS Census 2016, question 29.

[5] SUAS Census 2016, question 29.

[6] Statue on Children and Adolescents (ECA) [Estatuto da Criança e do Adolescente], Law no. 8.069, July 13 1990, art. 101.

[7] “Technical Guidelines: Reception Services for Children and Adolescents” [Orientacoes Técnicas: Servicos de Acolhimento para Criancas e Adolescentes], Resolution no.1, June 18, 2009, p. 67-74.

[8] SUAS Census 2016, question 4.

[9] São Paulo Public Prosecutor's Office, Civil Inquiry [Inquerito Civil] no. 033/17, vol. 1., p. 16.

[10] The Guardian Council for Children consists of five members, elected every four years, and is responsible for ensuring the rights of children. One council should exist in every municipality or administrative region of the Federal District. ECA, art. 131.

[11] “Norms on Certification of Entities of Social Assistance,” SUAS Census 2016, Question 6. Private entities wishing to secure public funding must be certified by the Ministry of Social Development. Law No. 12,101, November 27, 2009.

[12] Center on the Developing Child at Harvard University, The Science of Neglect: The Persistent Absence of Responsive Care Disrupts the Developing Brain: Working Paper No. 12, 2012, www.developingchild.harvard.edu. (accessed December 4, 2017); 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%... (accessed April,3, 2018); 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; Georgette Mulheir, “Deinstitutionalization: A Human Rights Priority for Children with Disabilities,” September 2012, http://www.equalrightstrust.org/ertdocumentbank/err9_mulheir.pdf (accessed April 3, 2018); 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 3, 2018); 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 April 3, 2018); 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 April 3, 2018).

[13] UNICEF and World Health Organization, “Early Childhood Development and Disability: A Discussion Paper,” 2012, http://apps.who.int/iris/bitstream/10665/75355/1/9789241504065_eng.pdf (accessed March 1, 2017).

[14] Mulheir, “Deinstitutionalisation;” Browne, “The risk of harm to young children in institutional care;” Inge Bretherton, "The origins of attachment theory: John Bowlby and Mary Ainsworth,” Developmental Psychology (1992), 28, pp. 759-775 http://www.psychology.sunysb.edu/attachment/online/inge_origins.pdf (accessed November 15, 2017); and Serena Cherry Flaherty, and Lois S. Sadler, “A Review of Attachment Theory in the Context of Adolescent Parenting,” Journal of Pediatric Healthcare, 2011, March-April,  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3051370/(accessed December 4, 2017), pp. 114-121.

[15] United Nations 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.

[16] Johnson R, Browne K, and Hamilton-Giachritsis C., “Young children in institutional care at risk of harm,” Save The Children and the Better Care Network, 2009, https://www.crin.org/en/docs/The_Risk_of_Harm.pdf (accessed November 6, 2016).

[17] Human Rights Watch interview with institution director, Rio de Janeiro, November 8, 2016.

[18] Human Rights Watch also visited five inclusive residences.

[19] Human Rights Watch interview with staff members in an institution, November 7, 2016 (location withheld for security reasons).

[20] Human Rights Watch interview with staff members in institutions (locations and dates withheld for security reasons).

[21] For children’s institutions, technical guidelines establish minimum staffing requirements, but are not binding. For institutions with children with disabilities the guidelines call for increased staff. “Technical Guidelines: Reception Services for Children and Adolescents,” pp. 68-69. Inclusive Residences also have staffing guidelines. “Technical Guidelines on the Institutional Reception Service for Youth and Adults with Disabilities in Inclusive Residences. Questions and answers,” November 2014, p. 44.

[22] Human Rights Watch interviews with staff at an institution, Rio de Janeiro, November 7, 2016; staff at an institution, near the Federal District, November 18, 2016; and at an institution, Bahia, April 5, 2017.

[23] Report of the United Nations Special Rapporteur on Torture, A/HRC/22/53, Human Rights Council, 22nd session, February 1, 2013.

[24] World Health Organization (WHO), “Strategies to end the use of seclusion restraint and other coercive practices,” WHO QualityRights Guidance and Training Tools, WHO/MSD/MHP/17.9, http://who.int/mental_health/policy/quality_rights/guidance_training_too... (accessed January 31, 2018).

[25] Ibid.

[26] Human Rights Watch visit to an institution, Rio de Janeiro, November 8, 2016.

[27] Human Rights Watch interview with institution staff, São Paulo, November 15, 2016.

[28] Human Rights Watch interview with institution staff, Rio de Janeiro, November 7, 2016.

[29] Human Rights Watch interview with institution staff, São Paulo institution, November 15, 2016.

[30] Human Rights Watch visits to institutions, São Paulo April 5, 2017; and Salvador, Bahia, April 5, 2017.

[31] Human Rights Watch interview with an institution staff member, Rio de Janeiro, November 8, 2016.

[32] Human Rights Watch visit to an institution, Rio de Janeiro, November 8, 2016.

[33] Human Rights Watch interview with Leonardo Barcellos, Rio de Janeiro, March 28, 2017.

[34] Human Rights Watch interview with Alvaro [not his real name] in an institution, Salvador, November 6, 2017.

[35] Human Rights Watch visits to one institution in Rio de Janeiro, two institutions in Bahia, and three institutions near the Federal District, April 5, 2017.

[36] Human Rights Watch interview with an institution staff nurse, Rio de Janeiro, November 7, 2016.

[37] Human Rights Watch interview with an institution staff nurse, Rio de Janeiro, November 7, 2016.

[38] Human Rights Watch interview with [name withheld] in [place withheld], November 2016.

[39] 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, arts. 1, 3, and 5.

[40] CRPD, art. 22.

[41] Human Rights Watch interview with an institution nurse, Rio de Janeiro, November 7, 2016.

[42] Human Rights Watch interview with institution director, Rio de Janeiro, November 8, 2016.

[43] Human Rights Watch visit to an institution, Rio de Janeiro, November 8, 2016.

[44] Human Rights Watch visits to one institution in São Paulo and three institutions in Rio de Janeiro, November 14, 2016.

[45] Human Rights Watch visit to an institution in Rio de Janeiro, November 8, 2016.

[46] Human Rights Watch interview with Cecilia [not her real name], Rio de Janeiro, March 27, 2017.

[47] 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. 31.1.

[48] CRPD, art. 30.5.

[49] Human Rights Watch interview with institution administrator, Rio de Janeiro, November 15, 2016. Acao Crista Vicente Moretti Facebook page: https://pt-br.facebook.com/AcaoCristaVicenteMoretti/; La Maria de Lourdes Facebook page: https://pt-br.facebook.com/larmariadelourdesrj/; Lar da Redenção Facebook page: https://www.facebook.com/LAR-DA-Reden%C3%A7%C3%A3o-660323963998341/; Casa da Criança Betinho Facebook page: http://www.casadacriancabetinho.com.br/; Vila Pequenino Jesus Facebook page: https://www.facebook.com/pg/vilapequeninojesus/reviews/?ref=page_internal. Abrigo Betel Facebook page: https://www.facebook.com/abrigobetel/?rf=484170998408596.

[50] Abrigo Ceilândia Esperança webpage, http://abrigodeceilandia.blogspot.mx/.

[51] CRPD art. 4.1 (e), in conjunction with art. 5.

[52] United Nations Committee on the Rights of Persons With Disabilities, Concluding Observations on Peru, CRPD/C/PER/CO/1, May 9, 2012, paras. 18 and 19; Mexico, CRPD/C/MEX/CO/1, October 27, 2014, paras. 17 and 18; Colombia CRPD/C/COL/CO/1, September 30, 2016, paras. 20 and 21; Guatemala, CRPD/C/GTM/CO/1, September 30, 2016, paras. 25 and 26; Uruguay, CRPD/C/URY/CO, August 31, 2016, paras. 19 and 20; and Chile, CRPD/C/CHL/CO/1, April 13, 2016, paras. 17 and 18.

[53] Human Rights Watch interview with an institution director, Rio de Janeiro, March 28, 2017.

[54] Human Rights Watch interview with an institution director, Rio de Janeiro, March 21, 2018

[55] Human Rights Watch interview with institution staff members, Rio de Janeiro, November 8, 2016.

[56] Human Rights Watch interview with institution staff members, Rio de Janeiro, November 7, 2016.

[57] WHO, “Realising recovery and the right to mental health and related services,” WHO QualityRights Guidance and Training Tools, WHO/MSD/MHP/17.4, http://www.who.int/mental_health/policy/quality_rights/guidance_training... (accessed May 5, 2018).

[58] Human Rights Watch interview with institution director, Rio de Janeiro, March 21, 2018.

[59] CRPD, arts. 15, 16, 17.

[60] Law of Brazil on Inclusion of People with Disabilities (Statute on People with Disabilities), no. 13,146/2015, July 6, 2015, arts. 27 and 28.

[61] Human Rights Watch interview with institution staff member, Bahia, April 5, 2017.

[62] Human Rights Watch interview with institution staff member, Bahia, April 5, 2017.

[63] São Paulo Public Prosecutor’s Office, Civil Inquiry no. 033/2017, vol. 1, p. 97.

[64] Human Rights Watch interviews with staff in one institution in Rio de Janeiro and two in São Paulo, November 21, 2016.

[65] Human Rights Watch interview with Alberto [not his real name], an institution, Bahia, April 5, 2017.

[66] Human Rights Watch interview with Mariana [not her real name], an institution, São Paulo, April 7, 2017.

[67] Human Rights Watch interview with Clementina Bagno, Brasilia, November 22, 2016.

[68] CRPD, art. 24. United Nations Committee on the Rights of Persons with Disabilities, General Comment No. 4, On the Right to Inclusive Education, UN Doc. CRPD/C/GC/4 (2016).

[69] CRPD, art. 24.2.a

[70] CRC, art. 28.1.

[71] UN Committee on the Rights of Persons with Disabilities, Concluding Observations on the Initial Report of Brazil, CRPD/C/BRA/CO/1, September 29, 2015, paras. 44 and 45.

[72] CRPD arts., 1, 4, 5, and 24.

[73] Human Rights Watch visit to an institution, São Paulo, November 13, 2016.

[74] Human Rights Watch visit to an institution, Bahia, April 5, 2017.

[75] Human Rights Watch interview with Judge Reinaldo Cintra Torres de Carvalho, November 13, 2016 and ECA.

[76] SUAS Census 2016, question 41.

[77] For example, Human Rights Watch interview with institution staff, Rio de Janeiro, November 8, 2016.

[78] Human Rights Watch interview with institution director, São Paulo, November 16, 2016.

[79] São Paulo Prosecutor's Office Civil Inquiry no. 033/2017.

[80] CRPD, art. 19.

[81] UN CRPD Committee General Comment No. 5, Living Independently and Being Included in the Community, UN DOC CRPD/C/GC/5, October 27, 2017, paras. 28-37, 49.

[82] To review placements, hearings take place at least every six months. The judge for children, the Public Prosecutor’s Office and the Public Defender's Office visit institutions to monitor cases and receive complaints. The Public Prosecutor’s Office in Brasília said they had no procedural accommodation in place to enable children with disabilities to enter complaints.

[83]Law no. 13.509, on amending Law No. 8,069 of July 13, 1990 (Statute of the Child and Adolescent), the Consolidation of Labor Laws (CLT), approved by Decree-Law No. 5,452, dated May 1, 1943, and Law No. 10,406 of January 10, 2002 (Civil Code), November 22, 2017.

[84] Human Rights Watch interview with Pedro Gonzales, Public Defender, Rio de Janeiro’s Public Defender Office, Rio de Janeiro, November 11, 2016. At the time of the interview there was a two-year limit.

[85] American Convention on Human Rights, Adopted at the Inter-American Specialized Conference on Human Rights, San José, Costa Rica, 22 November 196, art. 71.1, CRC, arts. 5, 9, CRPD, art. 23.1, CRC, General Comment no. 9, 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), para, 49.

[86] CRC, arts. 3(1) and 9(1).

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

[88] CRPD, article 23(5).

[89] CRC, General Comment no. 9, para. 49. And, for example, CRPD Concluding Observations on Armenia (CRPD/C/ARM/CO/1 paragraph 12 (a) (b)); and CRPD concluding observations on Iran (CRPD/C/IRN/CO/1 paragraph 17 (c)).

[90] CRPD Concluding Observations on Brazil, paras. 36 and 37.

[91] SUAS Census 2016, question 28.

[92] Irene Rizzini, professor and researcher at Pontifical Catholic of Rio de Janeiro University, carried out a study of children with disabilities living in institutions in Rio de Janeiro for long periods of time. “From confinement to reception: changing the practice of institutionalization of children and adolescents with disabilities in the State of Rio de Janeiro,” [Do confinamento ao acolhimento: mudando a prática de institucionalização de crianças e adolescentes com deficiência no Estado do Rio de Janeiro], CNPq/Ministério da Saúde, 2008, http://www.ciespi.org.br/media/Livros%20e%20Periodicos/Livros%20e%20peri... (accessed May 5, 2018). A second study found that 42.2 percent children with disabilities in Rio de Janeiro in specialized institutions spend half their lives in institutions. For children with disabilities in general institutions, 59 percent spent more than half their lives there. Irene Rizzini and Neli Almeida, “Institutionalization of children and adolescents with disabilities: annotations to a public policy agenda,” [Institucionalização de crianças e adolescentes com deficiência: anotações para uma agenda de política pública], Revista Saúde & DH, ano 7 nº 7, Rio de Janeiro: Fiocruz, 2011, https://www.streetchildrenresources.org/resources/a-institucionalizacao-... (accessed May 5, 2018), pp. 159 -177.

[93] Resolution Report no. 71/2011 [Relatorio da Resolucao N° 71/2011], National Council of The Public Prosecutor’s Office, 2013, p. 42.

[94] Human Rights Watch visits to two institutions in Rio de Janeiro, November 2016; an institution in Brasilia, November 18, 2016; and an institution in Salvador, April 5, 2017.

[95] Human Rights Watch interview with institution staff member, São Paulo, November 15, 2016.

[96] Human Rights Watch visit to an institution, São Paulo, November 14, 2016.

[97] Human Rights Watch visit to an institution, Rio de Janeiro, March 23, 2018.

[98] Human Rights Watch interview with institution director, Rio de Janeiro, November 7, 2016.

[99] Human Rights Watch interview with institution staff member, Rio de Janeiro, November 8, 2016.

[100]Human Rights Watch interview with Renata Ignarra, president, the Foundation for Children and Adolescents [Fundação para a Infância e Adolescência FIA], Rio de Janeiro, November 9, 2016.

[101] Human Rights Watch visit to an institution, Rio de Janeiro, November 18, 2016.

[102] Human Rights Watch interview with institution staff, Nova Friburgo, March 23, 2018.

[103] Human Rights Watch interview with Antonia [not her real name], at an institution in Rio de Janeiro, November 10, 2016.

[104] Ibid.

[105] “The denial of the legal capacity of persons with disabilities and their detention in institutions against their will, either without their consent or with the consent of a substitute decision-maker, is an ongoing problem. This practice constitutes arbitrary deprivation of liberty and violates articles 12 and 14 of the Convention.” UN CPRD Committee, Committee General Comment No. 1, UN Doc CRPD/C/GC/1, May 19, 2014, para. 40. 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. 9; ACHR art. 7; CRPD, art 14. CRPD Committee General Comment no. 5, para. 27.

[106] Code of Civil Procedure, Law No. 13,015, March 16, 2015, arts. 747-763.

[107] CRPD, art. 12(2) and (3).

[108] ICCPR 9(4) and Inter-American Court of Human Rights, Castillo Petruzzi et al. v. Peru, para. 184. When there is no recourse the Court considers it also a violation to the right to an effective remedy.

[109] United Nations Human Rights Committee, General Comment 35, on Liberty and Security of Person, UN Doc CCPR/C/GC/35, December 16, 2014, para. 12.

[110] Human Rights Watch interview with institution staff member, Rio de Janeiro, November 7, 2016.

[111] Human Rights Watch interview with institution staff member, Rio de Janeiro, November 8, 2016.

[112] Human Rights Watch interview with institution director, São Paulo, November 16, 2016.

[113] Human Rights Watch interviews with institution staff, Brasilia, November 18, 2016.

[114] Human Rights Watch interview with institution staff, Bahia, April 5, 2017.

[115] Human Rights Watch interview director of an inclusive residence, São Paulo, November 16, 2016.

[116] Lucienne Lima, O aroma de uma Vida (Scent of a Lifetime). 

[117] Human Rights Watch interview with institution staff member, Rio de Janeiro, March 19, 2018.

[118] Human Rights Watch interview with Carolina [not her real name], near Brasilia, November 18, 2016.

[119] Human Rights Watch interview with Joseph [not his real name], Rio de Janeiro, March 19, 2018.

[120] Human Rights Watch interview with institution staff, Rio de Janeiro, March 19, 2018.

[121] Human Rights Watch interview with institution staff, São Paulo, November 15, 2016.

[122] Law of Brazil on Inclusion of People with Disabilities (Statute on People with Disabilities), no. 13,146/2015, July 6, 2015.

[123]Senate Bill No. 757, 2015, Amending Law No. 10,406, dated January 10, 2002 (Civil Code), Law No. 13,146, of July 6, 2015 (Statute on People with Disabilities), and Law No. 13,105 of March 16, 2015 (Code of Civil Procedure).

[124] CRPD, art. 12(3).

[125] CRPD, General Comment 1, para. 21.

[126] Social Assistance Councils consist of government officials and civil society members and participate in the formulation, evaluation, control and monitoring of social assistance policies. Law on Social Assistance, art. 9; Resolution of the National Council on Social Assistance, no. 109. Human Rights Watch requested interviews with staff at Municipal Councils in Rio de Janeiro, São Paulo and the Federal District, but none of them agreed to interviews. The Municipal Council of Salvador agreed to be interviewed.

[127] Human Rights Watch interview with Roberto Souza, Public Prosecutor from São Paulo, April 26, 2018.

[128] Also, each municipality in Brazil has its own bylaws and regulations, including for the work of Social Assistance Councils. Law establishing the Municipal Council of Social Assistance of Rio de Janeiro, law no. 2469, August 30, 1996; Law establishing the Municipal Council of Social Assistance of São Paulo, law no. 12.524, December 1, 1997.

[129] Resolution of the National Council for Social Assistance no. 16, May 5, 2010; And, for example, law establishing the municipal council of social A\assistance of the Federal District, Law Nº 997, December 29, 1995.

[130] Bylaw of the Rio de Janeiro Social Assistance Municipal Council art. 2, section XVII.

[131] Human Rights Watch interview with Jozias Sousa, Chair of the Municipal Council for Social Assistance in Salvador, Bahia. April 19, 2018.

[132] Only specialized judges for children can place a child in an institution on an exceptional and temporary basis, for up to 18 months, as a protective measure when the child's rights are in danger and no solutions are available. A full explanation is provided above.

[133] A June 2011 resolution from the National Council of the Federal Prosecutor’s Office instructed all prosecutor’s offices to perform periodical reviews to shelters for children according to the size of the municipality concerned. Resolution No. 71, June 15, 2011.

[134] Human Rights Watch interview with Roberto Souza, Public Prosecutor’s Office, São Paulo, April 26, 2018.

[135] National Council of the Federal Prosecutor recommendation no. 64, January 24, 2018. The recommendation establishes that Public Prosecutors’ Offices should ensure residential institutions provide adequate physical conditions, material and staff resources.

[136] “Public prosecutors in Brasilia asked for the removal of the Ceilândia Esperança Shelter managers” [Promotoria pede asastamento da direcao do Abrigo dos Excepcionais de Ceilândia], Diario de Ceilândia, December 19, 2014, http://www.diariodeceilandia.com.br/2014/12/promotoria-pede-afastamento-... (accessed February 2, 2018).

[137] Human Rights Watch interviews with Luisa de Marillac, Public Prosecutor’s Office in Brasilia, November 18, 2016; with Eliane de Lima Pereira, Rafael Luiz Lemos de Souza, Rodrigo Merina, Public Prosecutor’s Office in Rio de Janeiro, March 28, 2017; with Sandra Lucía García Massud and Luciana Bergamo, Public Prosecutor’s Office in Sao Paulo, April 3, 2017; with Pedro Gonzales, Public Defender’s Office in Rio de Janeiro, November 11, 2016; and with Ana Virginia Rocha, Public Defender’s Office in Salvador, Bahia, April 4, 2017.

[138] Human Rights Watch interviews with Luisa de Marillac, Public Prosecutor’s Office in Brasilia, November 18, 2016; with Sandra Lucía García Massud, Public Prosecutor’s Office in Sao Paulo, April 3, 2017; and with Márcia Regina Ribeiro Teixeira, Public Prosecutor’s Office in Bahia, April 2017.

[139] For example, see training material from Bizchhut (Israel Human Rights Center for People with Disabilities) for justice institutions and law enforcement agencies on implementing procedural accommodations for people with disabilities. Sharon Primor and Na’ama Lerner, “The Rights of Persons with Intellectual, Psychosocial and Communication Disabilities Access to Justice: Accommodations in the Criminal Process,” http://bizchut.org.il/he/wp-content/uploads/2015/01/Booklet-The-right-of... (accessed April 9, 2018).

[140] National Council of the Public Prosecution Service, “A Closer Look at Childcare Services for the Country,” Report of the Resolution N° 71/2011, 2013, p. 87.

[141] Human Rights Watch interview with Celia Barcellos, Rio de Janeiro, March 28, 2017. According to the bylaw that regulates BPC, essentially all persons with disabilities who live in institutions are entitled to receive the benefit, regardless of their family income because they do not live with their families. Decree no. 6,214, September 26, 2007, art. 4, V.

[142] Human Rights Watch interview with Vilma [not her real name], mother of a 13-year-old girl with a disability, Salvador, April 5, 2017.

[143] Human Rights Watch interview with institution director, Rio de Janeiro, November 8, 2016.

[144] Human Rights Watch interview with Roseli [not her real name], mother of João, a young adult with disabilities, Rio de Janeiro, November 9, 2016.

[145] Human Rights Watch interview with Alvaro [not his real name], instituion, Bahia, November 6, 2017.

[146] Human Rights Watch interview with Catarina [not her real name], Rio de Janeiro, March 27, 2017, and Human Rights Watch WhatsApp correspondence with an institution director, January 25, 2018.

[147] Human Rights Watch interview with Rita Barreto, Rio de Janeiro, November 11, 2016.

[148] Human Rights Watch interview with an institution director, Rio de Janeiro, March 28, 2017.

[149] Human Rights Watch interview with Janete Aparecida Giorgetti Valente, Municipal Secretariat of Social Assistance and Municipal Security, Campinas, March 30, 2017.

[150] Human Rights Watch interview with Flavia [not her real name], Rio de Janeiro, March 27, 2017.

[151] Human Rights Watch interview with Neiva Correa Marins and Carlos Eduardo Cruz, Rio de Janeiro, March 27, 2017.

[152] Human Rights Watch interview with Pedro Gonzales, Public Defender, Rio de Janeiro, November 11, 2016.

[153] See for example, “Institutional care is eight times more expensive than social services support to vulnerable families,” Lumos, “The Cost of Change,” https://www.wearelumos.org/what-we-do/policy/cost-of-change/ (accessed February 14, 2018); UNICEF, “Towards Alternative Care Services in Armenia: Costing Residential Care,” https://resourcecentre.savethechildren.net/library/towards-alternative-c... (accessed February 14, 2018). The UNICEF study found: “services of residential institutions are very expensive”…“the reallocation of children into family care does not necessarily lead to the creation of an additional burden on the state budget” and that “the savings can be quite tangible.” According to a UK study from 2008, the average cost for maintaining a child for a week in a residential placement is 4.5 times that of an independent living arrangement, eight times that of the cost for foster care, 9.5 times that of a placement with family and friends, and more than 12.5 times that of a placement with own parents. Eight children could be placed in foster care for every child placed in a residential unit. H. Ward, L. Holmes, J. Soper, “Costs and consequences of placing children in care,” Jessica Kingsley Publishers, 2008, in Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-Based Care, 2009, p. 13. A report from the Estonian National Audit Office showed that the state pays between 10,000 and 16,000 kroon per month for each child raised in a substitute home, compared to 3000 kroon per month for each child in foster care. Estonian National Audit Office, as cited in, “Opening Doors for Europe’s Children: Deinstitutionalization and Quality Alternative Care for Europe’s Children,” September 2014.

[154] European Expert Group on the Transition from Institutional to Community-based Care, “Common European Guidelines on the Transition from Institutional to Community-Based Care,” Brussels, November 2012, pp. 102-103. 

[155] National Council for Social Assistance Resolution No. 109, November 11, 2009.

[156] Institutional Welfare Service for Youth and Adults with Disabilities in Inclusive Residences, “Preliminary Technical Guidelines, Questions and Answers,” http://www.ocuidador.com.br/imgs/utilidades/cartilha01-50fd29d85bec3.pdf (accessed May 5, 2018).

[157] Ibid., pp. 10- 11.

[158] SUAS Census 2016, p. 10.

[159] “Guidelines on the Institutional Reception Service for Youth and Adults with Disabilities in Inclusive Residences, Questions and answers,” November 2014, p. 9.

[160] Ibid., and State report of the Brazilian government submitted to the CRPD Committee, 2012, para. 154. Resolution Number 109, November 11, 2009.

[161] For information on the operation of this program see: http://www.mpsp.mp.br/portal/page/portal/cao_civel/aa_ppdeficiencia/aa_p....

[162] Human Rights Watch interview with director of inclusive residence, São Paulo, November 15, 2016.

[163] Office of the High Commissioner for Human Rights (OHCHR), “Thematic study on the right of persons with disabilities to live independently and be included in the community,” A/HRC/28/37, December 12, 2014, para. 21; and CRPD Committee General Comment no. 5, para. 16.

[164] Human Rights Watch interview with Francisco [not his real name], São Paulo, November 15, 2016.

[165] Human Rights Watch interview with Francisco, São Paulo, November 15, 2016.

[166] Human Rights Watch interview with Mariana [not her real name], São Paulo, November 15, 2016.

[167] Human Rights Watch interview with director of an inclusive residence, São Paulo, November 15, 2016.

[168] Human Rights Watch visit to an inclusive residence, São Paulo, November 15, 2016.

[169] Human Rights Watch interview with director, of an inclusive residence, São Paulo, November 15, 2016.

[170] CRPD Committee General Comment no. 5, para. 16.

[171] CRPD Committee, General Comment no. 5, para. 16.

[172] CRPD, preamble (J).

[173] CRPD Committee, General Comment no. 5, para. 16.

[174] Human Rights Watch, “Croatia: Locked up and Neglected. Meager Progress on Moving People with Disabilities into the Community,” News release, October 6, 2014, https://www.hrw.org/news/2014/10/06/croatia-locked-and-neglected. 

[175] “Technical Guidelines: Reception Services for Children and Adolescents,” p. 95.

[176] Human Rights Watch interview with Claudia Vidigal, former head, National Secretariat for Children and Adolescents, Brasilia, November 15, 2016.

[177] “Technical Guidelines: Reception Services for Children and Adolescents.”

[178] This is done at the municipal level through the Reference Center for Social Assistance [Centro de Referência de Assistência Social] (CRAS).

[179] Special social protection is managed by the Special Reference Center for Social Assistance [Centro de Referência Especializado de Assistência Social] (CREAS), which functions at the municipal, state or regional level.

[180] Human Rights Watch interview with Janete Aparecida Giorgetti Valente, Municipal Secretariat of Social Assistance and Municipal Security, Campinas, March 30, 2017.

[181] See: Special Social Protection Service for Persons with Disabilities, the Elderly and their Families, http://mds.gov.br/assistencia-social-suas/servicos-e-programas/servico-d... família.

[182] “TCU points to the need for a permanent policy to protect the rights of persons with disabilities” (TCU aponta necessidade de política permanente de proteção aos direitos da pessoa com deficiência), October 10, 2017. http://portal.tcu.gov.br/imprensa/noticias/tcu-aponta-necessidade-de-pol... (accessed May 5, 2018).

[183] Law Creating the Family Grant Program and other provisions, Law No. 10,836, January 9, 2004.

[184] “Bolsa Família reaches 225 thousand new families in January,” [Bolsa Família chega a 225 mil novas famílias em janeiro], Ministry of Social Development, January 2018, http://mds.gov.br/area-de-imprensa/noticias/2018/janeiro/bolsa- família -chega-a-225-mil-novas- famílias -em-janeiro (accessed February 7, 2018).

[185] To receive the BPC, medical experts and social workers from the National Institute for Social Security carry out a medical evaluation of the disability and level of impairment. The BPC is re-evaluated every two years. Law on Social Assistance, No. 8,742, December 7, 1993, art 20.3.

[186] Federal Constitution of the Republic of Brazil, 1988, art. 203, sec. V; Law on Social Assistance, arts. 2 and 20.

[187] Law on Social Assistance, art. 20.4.

[188] São Paulo Prosecutor’s Office, Civil Inquiry no. 033/2017, vol. 1.

[189] Human Rights Watch interview with institution director, Nova Friburgo, March 23, 2018.

[190] “Guide for Assistance Technicians and Managers of Changes to Continuous Benefit Rules,” [Guia para Técnicos e Gestores da Asistencia sobre alteracoe nas regras do Beneficio de Prestacao Continuada], Ministry of Social Development, http://www.mds.gov.br/webarquivos/publicacao/assistencia_social/Catalogo....

[191] Human Rights Watch interview with Luciana, Rio de Janeiro, November 11, 2016.

[192] Human Rights Watch interview with Neiva Correa Marins and Carlos Eduardo Cruz, Rio de Janeiro, March 27, 2017.

[193] Human Rights Watch interview with Raquel Terra, Obra Social Dona Meca, daycare center, Rio de Janeiro, November 8, 2016.

[194] Human Rights Watch interview with Janete Valente Giorgetti Valente.

[195] “Technical Guidelines: Reception Services for Children and Adolescents,” p. 83.

[196] SUAS Census 2016, p. 14.

[197] Human Rights Watch interview with Isabel Penteado, São Paulo, March 31, 2017.

[198] Human Rights Watch interview with Judge Reinaldo Cintra Torres de Carvalho, November 13, 2016.

[199] Human Rights Watch interview with Janete Aparecida Giorgetti Valente. The foster family program in the municipality has placed 190 children in foster care since it was created 20 years ago.

[200] Human Rights Watch interview with Janete Aparecida Giorgetti Valente, and Campinas Municipal Law no. 14.253, May 2, 2012, art. 14.1.

[201] Ibid. 

[202] In São Paulo, in the last 10 years, 88 children with disabilities were adopted from institutions. São Paulo Prosecutor’s Office, Civil Inquiry no. 033/2017, volume 1, p. 71.

[203] “Larissa: Breaking the Barriers to Adoption of Children with Disabilities” [Larissa: quebrando a barreira da adoção de crianças com deficiência], National Council of Justice, March 13, 2018, http://www.cnj.jus.br/index.php?option=com_content&view=article&id=86328... (accessed March 13, 2018).

[204] According to the registry, 14,380 candidates stated that they would accept children “with other health conditions,” National Adoption Registry (Cadastro Nacional de Adoção), National Council of Justice, http://www.cnj.jus.br/cnanovo/pages/publico/index.jsf (accessed February 15, 2018).

[205] ECA, arts. 47.9 and 88, VII.

[206] Law on Inclusion of People with Disabilities.

[207] Ibid., art. 94.

Posted: January 1, 1970, 12:00 am

Avera Mangistu’s parents and disability rights activists at a protest tent in Jerusalem.

© 2018 Human Rights Watch

April 4 was the fifth day of Passover, the weeklong Jewish holiday commemorating freedom from slavery, but Avera Mangistu’s parents – who were protesting outside the Israeli prime minister’s house – were keenly aware that their son was not free.

On September 7, 2014, Mangistu, now 31, walked into the Gaza Strip from Israel and was apparently detained by Hamas. His parents have not heard from him since. Along with a second Israeli, 30-year-old Hisham al-Sayed, Mangistu is believed to be being held in unlawful incommunicado detention in Gaza.

Although Hamas has not confirmed that it even holds the Israelis, it has accused both of being soldiers or spies. Hamas refuses to divulge any information about them, much less consider their release, until Israel negotiates for the release of Palestinians held in Israeli prisons.

 Two Israeli men with serious mental health conditions who crossed separately from Israel into the Gaza Strip in 2014 and 2015 have apparently been held by the Hamas military wing.

Human Rights Watch’s investigation found that the two men are civilians with mental health conditions who have histories of wandering far on foot. Human Rights Watch raised their cases with Hamas officials during a visit to Gaza in 2016, thus far to no avail. Israeli officials have rejected the requests of senior Human Rights Watch researchers to return to Gaza to advocate for their release.

It’s not just Hamas that is detaining people unlawfully. Human Rights Watch has documented Israel’s use of its Unlawful Combatants Law to detain Palestinians from Gaza without meaningful judicial review, as well as Israel’s excessive restrictions on family visits to Palestinian prisoners from Gaza. But one side’s abuses do not justify violations by the other. Human beings are not bargaining chips.

The two Israelis belong to communities marginalized within Israel: Mangistu emigrated to Israel from Ethiopia, and al-Sayed is Palestinian Bedouin. Both have psychosocial disabilities. Their families have struggled to call attention to their plight. In the Israeli public sphere, at least, their calls are sometimes overshadowed by concern over the bodies of two dead Israeli soldiers that are being held by Hamas, efforts which have more conspicuous official support. Both Israel and Hamas are holding bodies of slain fighters, acts that inflict cruelty on families trying to mourn loved ones.

Particularly painful is the refusal of Hamas to release information about their captives’ conditions and permit correspondence between the men and their families, as is required by international humanitarian law. Hamas has also not allowed visits by the International Committee of the Red Cross.

“Why are they holding him?” Mangistu’s mother, Agurnesh, asked, wiping away tears. “Hamas officials don’t have children? Of course they have children. [Avera] wasn’t a soldier. Please bring him back to me.”

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

Summary

The police asked me very nasty things like how it felt for me. I told them I was totally unconscious, so how would I know? The police said things like, ‘She’s mental, why should I pay attention to her?’ 
—Susmita, 26, a woman with a psychosocial disability from Kolkata, West Bengal, whom four male neighbors sedated and gang-raped in February 2014

[The police] should be sensitized to the emotional and the psychological needs of the victim and how to work with women and girls with disabilities. It is important to sensitize every officer—from top to bottom.
—Sanjay Gunjyal, inspector general of police from Uttarakhand

In June 2013, Chandra, a 12-year-old girl with cerebral palsy, was kidnapped, raped and left bleeding in a field near her home in West Bengal state, India. Chandra was unable to speak, sit, stand, or walk independently, so she could not call for help or go home. After several hours, some villagers found Chandra in the field. She died a few months later due to health complications.  

Women and girls with different disabilities face high risk of sexual violence in India. Those with physical disabilities may find it more difficult to escape from violent situations due to limited mobility. Those who are deaf or hard of hearing may not be able to call for help or easily communicate abuse, or may be more vulnerable to attacks simply due to the lack of ability to hear their surroundings. Women and girls with disabilities, particularly intellectual or psychosocial disabilities, may not know that nonconsensual sexual acts are a crime and should be reported because of the lack of accessible information.

Access to justice is particularly difficult for women and girls with disabilities largely due to the stigma associated with their sexuality and disability. As a result, they often do not get the support they need at every stage of the justice process: reporting the abuse to police, getting appropriate medical care, and navigating the court system. As former chairwoman of the National Commission for Women, Lalitha Kumaramangalam, said in December 2015: “One of the biggest challenges for women [with disabilities] is access [to services], not just physical but access across the board.” 

After the fatal gang rape of a young woman in Delhi in December 2012, sexual violence against women in India came under a global spotlight. The government responded to the public outrage and civil society protests by strengthening laws—known as The Criminal Law (Amendment) Act, 2013 (the 2013 amendments)—against sexual violence, which it declared its intent to enforce.

The amendments include several provisions to safeguard the rights of women and girls, including those with disabilities, and facilitate their participation in the investigative and judicial processes. For example, women and girls with disabilities have the right to record their statement with police in their home or a place of their choice, and the right to assistance by an interpreter or support person when the complaint is recorded and during trial. The protections also apply to women who are seriously physically hurt or who have a temporary disability.

This report, based on 17 cases of sexual violence against women and girls with disabilities, comes five years since these amendments were adopted, and follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realized.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse.

These women should no longer remain the invisible victims of sexual violence.

Reporting Sexual Violence

In 2013, Kanchana, a 19-year-old woman with an intellectual disability from a village in Hooghly district in West Bengal, was raped on multiple occasions by a man from her neighborhood. Kanchana was unaware that she should report that she was raped, which was only discovered when she was discovered to be five-months pregnant. Even then, it was difficult for her to explain what had happened.

This is not unusual. Globally, women and girls with disabilities face unique barriers to reporting that hinder their access to redress. Indian authorities acknowledge this problem. According to the 2014 Guidelines and Protocols for Medico-Legal Care for Victims/Survivors of Sexual Violence issued by India’s Ministry of Health and Family Welfare, women and girls with disabilities face particular barriers to reporting sexual abuse:

…[be]cause of the obvious barriers to communication, as well as their dependency on caretakers who may also be abusers. When they do report, their complaints are not taken seriously and the challenges they face in expressing themselves in a system that does not create an enabling environment to allow for such expression, complicates matters further.

Yet, the government has no system to even register attacks against women and girls with disabilities, let alone formulate strategies and mechanisms to respond to their particular needs. A 2014 report by the United Nations Special Rapporteur on violence against women, Rashida Manjoo, following her visit to India, said a consistent lack of disaggregated data collection “renders the violence committed against women with disabilities invisible.”

Interacting with Police

Women and girls with disabilities may require accommodations—distinct types of support depending on their disabilities—that are procedural and age-appropriate. This may include access to sign-language interpretation, the presence of someone to facilitate communication (“special educator”), the use of simple language, and the option to file reports in braille.

However, this support is often not available in India, even though the 2013 amendments and the Protection of Children from Sexual Offences Act, 2012, (POCSO) mandate these provisions. Most police do not have the training or expert support to handle such cases.

In Delhi, Pooja, an 11-year-old girl with an intellectual disability, was taken to the police station in August 2013 by her father after she was allegedly raped by a neighbor. The police brought in a sign language interpreter to assist the interviewee, but Pooja cannot speak due to a neurological condition; she is not deaf and has no knowledge of sign language. Though the investigating police officer tried to do the right thing by calling a support person, lacking access to proper guidance from a special educator, he misinterpreted Pooja’s intellectual disability.

In some cases, Human Rights Watch found that women and girls were excluded from accommodations on the basis of their inability to certify a disability. Even in cases where women and girls had visible physical disabilities or identified their disabilities, police failed to include specific details in the First Information Report (FIR), the document that sets the criminal justice process in motion. Lack of documentation in police reports precludes women and girls with disabilities from receiving specific need-based support from the police and judiciary.

Maneka, a 15-year-old girl from Delhi with both an intellectual and physical disability, reported being raped by two men from her neighborhood in October 2015. Although Maneka’s family conveyed her age and disabilities to the police, the FIR noted her age as over 18 and did not include her disability. As a result, she did not receive protections under POCSO or the 2013 amendments. The police’s failure to document Maneka’s intellectual and physical disabilities also undermined the process of evidence collection.

Maneka’s lawyer said that when she gave her statement to police, the investigating officer did not provide her with accommodations as required by law, such as support from a special educator. Maneka’s lawyer also said that the police failure to video Maneka’s statement—an accommodation to reduce trauma from repeated testimony— has added to the challenges in litigating her case.

Debashree Sabuj, deputy police commissioner for women in West Bengal, attributed many of these shortcomings to lack of training and information among police officers:

We have had no training. When we meet a disabled woman, we may not know how to speak to her properly. The police are not cruel. In most cases the police are simply ignorant. It is not that we don’t want to believe them, but we also worry that if we make a mistake, the wrong person will be punished. The police need education and we need to be sensitized on how to handle these cases.

Problems Accessing Medical Care

In cases of sexual violence, immediate medical attention and examination can both identify urgent medical needs and facilitate timely evidence collection. In 2014, India’s Ministry of Health and Family Welfare issued Guidelines and Protocols for Medico-Legal Care for Victims/Survivors of Sexual Violence, which include requirements for the medical examination of women and girls with disabilities such as providing accommodations like a special educator to take consent and medical histories.

The failure of many medical professionals to adequately explain medical tests and procedures and ensure that women and girls with disabilities are comfortable with the process may add to the trauma of sexual violence. For instance, Soumya said that her daughter Maneka, whose case is discussed above, was isolated from her family in the hospital and subjected to tests she did not understand.

They took Maneka in for the examination all alone—she was scared. No one explained to her or to me what tests they were doing. They gave her medicine but I don’t know what medicine it was. I helped Maneka to tie her pajamas [pants] afterward. I asked her about the tests, but she could not tell me. I am not literate so I could not read the papers.

Navigating the Judicial Process

The judicial process in India is slow and traumatic for many victims of crimes. However, unfamiliar and stressful court environments present a heightened challenge for women and girls with disabilities, especially during protracted legal cases. Lack of information among women and girls with disabilities and their families about their legal rights, including the right to legal representation, prevents many from advocating for their needs.

Lokapriya Kanungo, the National Advocacy Coordinator at Shanta Memorial Rehabilitation Centre, described the case of Karuna, a woman with low vision from Bhubaneshwar, Odisha, who reported being raped in June 2013:

The police did not help Karuna get legal aid. The staff of the [residential shelter home] helped her to find a lawyer, but the lawyer they found was not free of cost. It has been tough for her to continue with the lawyer. This has affected the progress of the case.

Since August 2013, Kanchana, who has an intellectual disability, and her mother Diya, have been to court five times. The court proceedings were not adequately explained to Kanchana. Diya recounted a simple misunderstanding when Kanchana was asked to wait in the plaintiff’s witness box in the courtroom, which proved deeply traumatic for her.

When they led Kanchana away from me, she cried and screamed. The police explained to me that she would be able to see me and that they would bring her straight back to my lap. She couldn’t understand. She was terrified and believed she was being taken to a lock-up. 

Difficulties Obtaining Compensation

Indian law and policies require that all state governments facilitate compensation, including interim relief in cases where no trial takes place because the offender cannot be traced or identified.

However, Human Rights Watch found that even in cases of extreme violence, trauma and economic hardship resulting from childbirth, women and girls with disabilities had difficulties in securing compensation from the court or the Criminal Injuries Compensation Board. Local activists said that there is no set standard, and amounts are often determined arbitrarily, vary between states, and can be driven by media publicity.

In 2014, in a remote village in Hooghly district, West Bengal, Noori, a 23-year-old Muslim woman with cerebral palsy and other disabilities—including the inability to speak or walk without a stick—was gang raped by three neighbors until she lost consciousness. Noori applied for compensation to cover her medical expenses, but more than three years later had yet to be awarded compensation.

Even when compensation has been awarded, the money may not reach the person in need. In August 2014, in a village in Herbertpur, Uttarakhand, Razia, a 13-year old girl with an intellectual disability and difficulties speaking, was raped by her younger brother’s 17-year-old tutor. With the support of the Latika Roy Foundation, an organization working with children and adults with developmental and other disabilities, Razia and her family pursued justice via the courts—and won. Razia was granted compensation of two lakh rupees (US $3,100).  However, at the time of writing, the family had yet to receive the money.

In 2013, the central government established the Nirbhaya Fund for schemes aimed at “prevention, protection and rehabilitation” of survivors of sexual violence. No specific fund for persons with disabilities exists in India and women with disabilities are not explicitly mentioned in the Nirbhaya Fund. Meenakshi Balasubramanium, from Equals—Centre for Promotion of Social Justice, said:

In the Nirbhaya Fund they should have put some amount aside for women with disabilities because accessibility and reasonable accommodation involves costs, but these aspects of access to justice for women and girls with disabilities have not been taken into consideration.

Compensation is particularly important for women and girls with disabilities and their families, especially those who live in rural areas or are from marginalized communities. In 2014, Diya and Kanchana applied for compensation under a West Bengal scheme. After Kanchana decided to carry her son to term, Diya had no choice but to leave her work. Now, as the primary caregiver for her daughter and grandson, she cannot leave home. Four years later, the case has been closed and their application for compensation is still pending.

***

India’s political and administrative leadership has repeatedly expressed concern over sexual violence and has said it is committed to reforms. The government has also taken pride in its efforts to protect the rights of persons with disabilities.

In 2007, India ratified the Convention on the Rights of Persons with Disabilities (CRPD). Under the treaty, states are obligated to “ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.” 

In December 2016, India’s parliament adopted the Rights of Persons with Disabilities Act, which protects all persons with disabilities from abuse, violence and exploitation, and articulates specific measures to be taken by appropriate government officials, executive magistrates and the police.

While these are important steps, much more remains to be done to reform the criminal justice system and ensure equal access to justice, including through accommodations, for women and girls with disabilities who are survivors of sexual violence. These cases should no longer remain in the shadows.

 

Key Recommendations

The key recommendations below focus on the unique needs of women and girls with disabilities who experience sexual violence. They should be implemented alongside those in Human Rights Watch’s report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India.

India’s Central and State Governments should:

  • Properly implement laws and policies to protect rights in cases of sexual violence against women and girls with disabilities.
  • Ensure that police, judicial officers, medical officers and judges receive adequate training in the rights of survivors of sexual violence, including women and girls with disabilities. Police and the courts should have access to “special educators,” who can identify disability accurately and provide support or other accommodations.
  • Adopt and implement the Ministry of Health and Family Welfare Guidelines and Protocols for Medico-Legal Care for Survivors/Victims of Sexual Violence across all states and jurisdictions. Ensure that all medical professionals are trained in accordance with these guidelines.
  • Collect and disaggregate data on sexual and gender-based violence on the basis of gender, disability and age to ensure adequate services and inform government policies and programs to better address the needs of women and girls with disabilities.
  • Formulate a uniform scheme across all Indian states to provide compensation to victims of sexual violence, including women and girls with disabilities. Compensation awarded should consider the additional costs incurred and urgent needs of victims with disabilities.

 

Methodology

Between January 2016 and December 2017, Human Rights Watch investigated the implementation of the Criminal Law (Amendment) Act, 2013, and the Protection of Children from Sexual Offences Act, 2012, in cases of rape and gang rape perpetrated against women and girls with disabilities. Our general assessment on the implementation of the 2013 amendments is featured in the November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India.[10]

For this report, we investigated 17 rape and gang-rape cases from eight states in India, including Chhattisgarh, Delhi, Karnataka, Maharashtra, Odisha, Tamil Nadu, Uttarakhand, and West Bengal. Locations were chosen based on the presence of strong local partners and access to information about these cases. While the scale and geographic scope of this research are not comprehensive, the cases demonstrate a range of challenges faced by women and girls with disabilities that we have reason to believe are indicative of challenges faced by women and girls with disabilities based upon extensive interviews with disability rights activists and a media survey of cases in English-language newspapers in India, conducted between January 2016 and August 2017.

The cases, which included eight girls and nine women, live with a spectrum of disabilities, including psychosocial disability; physical disability; blindness or low vision; hearing and speech disabilities; cerebral palsy, leading to multiple disabilities (cognitive and locomotor); intellectual disability; epilepsy, and in one case, a girl with a severe neurological condition leading to multiple disabilities (cognitive and speech disabilities).

All cases documented for this report took place after the passage of the Protection of Children from Sexual Offences Act, 2012 (POCSO and the Criminal Law (Amendment) Act, 2013 (2013 amendments), but before the Rights of Persons with Disabilities Act, 2016. Accordingly, in the cases covered in this report women and girls with disabilities were entitled to protection under both POCSO and the 2013 amendments. They were not, however, entitled to protection under the Rights of Persons with Disabilities Act, 2016.

In order to avoid traumatizing sexual violence survivors, Human Rights Watch investigated cases by first seeking information from social workers, lawyers, advocates and government stakeholders before engaging survivors and their families. We conducted interviews with 111 people including sexual violence survivors, family members, and lawyers, including a public prosecutor. We also met officials from mental health institutions and shelter facilities, police, government officials, special educators and disability rights activists.[11]

In five cases, we conducted direct interviews with women survivors of rape. These interviews were only conducted in instances when women wished to tell their stories. We did not conduct interviews directly with any children who were raped.

Interviews were conducted in English, Hindi, Bengali, Odiya, Tamil, and Kannada. Interviews for this report were conducted in person, by phone and email, with the medium of each interview given in citations. All interviews with women with disabilities who had been raped were conducted by women researchers and interpreters. Support persons, including social workers, were present as appropriate.

All interviewees participated voluntarily and without compensation. In order to protect the privacy of all women and girls whose experiences are described in this report, we have taken measures to exclude all names and identifying information. In some cases, we did not use the real name of the lawyers to protect client confidentiality.

Where possible, we also collected government documents, medical records, correspondence between survivors (and their family members) and government institutions and final judgments. We were able to collect supporting documents for eight cases. These materials were collected with permission from the survivors and are on file with Human Rights Watch.

 

Background and Legal Framework

Persons with Disabilities in India

Estimates of the size of the population with disabilities in India differ greatly. India’s Census 2011 reports that 2.21 percent of India’s population—or 26.8 million people live with disabilities.[12] The World Health Organization and World Bank report that 15 percent of the global population lives with some form of disability; 12 percent of males and 19 percent of females.[13] This discrepancy between Indian and international estimates can be attributed to discordant definitions of disability, lack of awareness and stigma—especially for women and girls—which results in under-reporting.[14]

Under-representation in Indian census data contributes to exclusion from other government data sources.[15] The National Family Health Survey and the National Crime Records Bureau do not include disaggregated data for persons with disabilities.

In 2014, the United Nations Special Rapporteur on Violence against Women, Rashida Manjoo, recommended disaggregated data collection not only on disability, but also sex, age, caste, religion, language and other relevant criteria.[16] The lacuna in counting persons with disabilities presents a significant hurdle to providing adequate services and a lack of attention to their needs in government policies and programs—including those aimed at supporting access to justice in cases of sexual violence.

Sexual Violence against Women and Girls with Disabilities

While there is no national disaggregated data on violence against women and girls with disabilities, senior government officials recognize this population faces heightened risk of violence, including sexual violence.[17] In December 2015, based on her consultations with disability advocates and experts, then-chairwoman of the National Commission for Women, Lalitha Kumaramangalam, said: “Regardless of the type of disability, incidents of rape with disabled women are much higher than with other women.”[18]   

India has a dearth of population-based prevalence studies on sexual violence, especially those focused on women and girls with disabilities. However, studies by academic and nongovernmental organizations provide some insight. For example, a 2004 survey across 12 districts and 729 respondents in Odisha state found that nearly all of the women and girls with disabilities surveyed were beaten at home, and 25 percent of women with intellectual disabilities had been raped.[19] A 2011 study found that 21 percent of the 314 women with disabilities surveyed experienced emotional, physical or sexual violence from someone other than their intimate partner.[20]

Rights of Women and Girls with Disabilities in India

Indian and international law protect the rights of women and girls with disabilities in cases of sexual violence.

National Laws

Since 2012, India’s legal framework for addressing sexual violence evolved rapidly and significantly. These changes have included the 2013 amendments to India’s penal code, the substantive criminal law governing offenses, and the passage of the Protection of Children from Sexual Offences Act, 2012 (POCSO), India’s first law that focuses exclusively on sexual offenses against those below age 18.[21]

In December 2016, India enacted the Rights of Persons with Disabilities Act, 2016,[22] which marks a significant shift from India’s Persons with Disabilities Act, 1995. The 2016 act redefines disabilities under Indian law to more closely align with the Convention on the Rights of Persons with Disabilities (CRPD), which India ratified in 2007.[23]

The Rights of Persons with Disabilities Act provides measures to protect all persons with disabilities from all forms of abuse, violence and exploitation, and articulates specific measures for appropriate governments, executive magistrates, and the police to take. Together, these laws introduced important new protections for women and girls with disabilities to aid their access to justice, especially in cases of sexual violence.

Accommodations under the Criminal Law Amendments, 2013

India’s 2013 criminal law amendments provide accommodations to support women with disabilities to access the criminal justice system.[24] These include:

  • The right to record their statement with police in the safety of their home or a place of their choice;[25]
  • The right to have their statements to police and examinations videotaped;[26]
  • The right to assistance by a “special educator” or interpreter when the complaint is recorded and during trial;[27]
  • Exemption from the need to repeat their statement during trial, subject to cross-examination.[28]

The 2013 amendments also seek to support women with disabilities in identifying arrested suspects during the “test identification parade,” a process previously based on visual identification alone. If the witness is a person with a disability, a judicial magistrate will oversee the procedure to ensure the witness is supported in identifying the accused with a means they find comfortable, by the sound of their voice or touch, for example.[29] The law also provides that this procedure should be videotaped for evidence purposes.[30]

While these legal provisions are major steps, gaps in the protection of women with disabilities remain. The 2013 Amendments do not incorporate adequate provisions for counseling facilities and rehabilitation for women with disabilities; training of law enforcement officials and judges to address the particular needs of women and girls with disabilities; and disaggregated data collection by both disability and gender.[31]

Accommodations under the Protection of Children from Sexual Offences Act, 2012

The POCSO introduced a range of child-friendly procedures and Special Courts to try child sexual abuse,[32]  accommodations for all children on the basis of their age, and specific accommodations for children with disabilities. All children are entitled to give their statement in the presence of an interpreter or translator.[33]

If a child has a disability, the Special Court may have the assistance of a special educator, any person familiar with the manner of communication of the child, or an expert in that field, to record the statement and evidence of the child.[34]  Finally, for all children, including children with disabilities, POCSO requires police officers to get statements recorded by a Judicial Magistrate under Criminal Procedure Code section 154(c).[35]

Protections under the Rights of Persons with Disabilities Act, 2016

The 2016 Rights of Persons with Disabilities Act marks a significant shift from the Persons with Disabilities Act, 1995. More closely in line with the CRPD, the legislation defines persons with disabilities to include 21 “impairments,” known as “scheduled disabilities,” that are certifiable and eligible for various entitlements under the law. This is a significant increase from the seven “impairments” listed under the 1995 legislation.[36]

Addressing sexual violence against women and girls with disabilities, the 2016 law prescribes imprisonment and fines for anyone who would “outrage the modesty of a woman with a disability.” It also protects all persons with disabilities from all forms of abuse, violence and exploitation, with specific measures to be taken by appropriate governments, executive magistrates and the police.

These measures include establishing procedures for reporting violence against persons with disabilities, creating public awareness, and ensuring that persons with disabilities have the protection, free legal aid, and connections with disabled persons organizations that they need to seek relief.[37]

Section 7 of the 2016 act expressly authorizes the executive magistrate with jurisdiction to receive complaints of abuse, violence, or exploitation perpetrated against persons with disabilities. Upon receiving such information, the executive magistrate is required to take immediate steps to stop or prevent the abuse, including passing protection orders, authorizing police or a local disabled persons organization to provide for safe custody or rehabilitation; providing maintenance; and facilitating protective custody if the person whose safety is at risk wants it.

India’s Obligations under International Law

India is party to the Convention on the Rights of Persons with Disabilities (CRPD), Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), Convention on the Rights of the Child (CRC), International Covenant on Economic, Social, and Cultural Rights (ICESCR), and International Covenant on Civil and Political Rights (ICCPR), among others.

Convention on the Rights of Persons with Disabilities

The CRPD contains provisions related to equal access to justice, freedom from torture and other ill-treatment, and freedom from exploitation, violence or abuse.[38] Article 13 calls upon states to ensure effective access to justice for persons with disabilities on an equal basis with others, including through the:

…provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.[39]

Article 15 obligates states to “take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.”[40] Article 16 requires states to take all appropriate measures to protect persons with disabilities from all forms of exploitation, violence and abuse, including by providing information on how to avoid, recognize and report instances of exploitation, violence and abuse.[41]

The UN Committee on the Rights of Persons with Disabilities, in its August 2016 General Comment on women with disabilities, addressed the challenges in accessing justice:

Women with disabilities face barriers to accessing justice, including with regard to exploitation, violence and abuse, owing to harmful stereotypes, discrimination and lack of procedural and reasonable accommodations, which can lead to their credibility being doubted and their accusations being dismissed. Negative attitudes in the implementation of procedures may intimidate victims or discourage them from pursuing justice. Complicated or degrading reporting procedures, the referral of victims to social services rather than the provision of legal remedies, dismissive attitudes by the police or other law enforcement agencies are examples of such attitudes. This could lead to impunity and to the invisibility of the issue, which in turn could result in violence lasting for extended periods of time. Women with disabilities may also fear reporting violence, exploitation or abuse because they are concerned that they may lose the support required from caregivers.[42]

 

Convention on the Elimination of All Forms of Discrimination against Women

The Declaration on the Elimination of Violence against Women, adopted by the UN General Assembly in 1993 to address violence against women, provides in article 4(c) that states should pursue by all appropriate means and without delay, a policy of eliminating violence against women and, to this end, should exercise due diligence to prevent, investigate and, in accordance with national legislation, punish acts of violence against women, whether those acts are perpetrated by the state or by private persons.[43]

While not specific to violence against women and girls with disabilities, the CEDAW Committee’s Recommendation No. 18 calls upon states to provide detailed information on the status of women with disabilities in their periodic reports, as well as special measures to ensure that they can participate in all areas of social and cultural life.

Recommendation No. 19, which is also not specific to women and girls with disabilities, calls for states to take appropriate and effective measures to overcome all forms of gender-based violence, including gender-sensitivity training for judicial and law enforcement officers; effective complaints procedures and remedies, including compensation; and reporting on legal, preventive and protective steps taken to fight violence against women.[44]

In 2014, the CEDAW Committee, in its concluding observations on India’s fourth and fifth periodic reports, recommended that the government strengthen police capacity to protect women and girls against violence and ensure that perpetrators are held accountable. The committee also recommended the government adopt standard procedures for the police in each state on gender-sensitive investigations and treatment of victims and of witnesses, and to ensure that First Information Reports (FIR) are duly filed.[45]

Convention on the Rights of the Child

Under the CRC, states should prohibit discrimination on the grounds of disability, should undertake to protect children from all forms of sexual exploitation and sexual abuse,[46] and to take all appropriate measures to promote physical and psychological recovery and social reintegration of any child who has been abused (article 39).[47]

In 2014, the Committee on the Rights of the Child, in its concluding observations on the consolidated third and fourth periodic reports of India, recommended that the government ensure that children with disabilities have access to basic services and enjoy their rights under the CRC. To this end, the committee recommended that India develop a national plan of action for children with disabilities that integrates all provisions of the convention, as well as indicators to measure outcomes and ensure effective coordination among relevant ministries for its implementation.[48]

International Covenant on Economic, Social, and Cultural Rights

Article 12 of the ICESCR guarantees the right to the highest attainable standard of physical health, including sexual and reproductive health, and mental health. In its authoritative interpretation of article 12, the Committee on Economic, Social and Cultural Rights, which monitors state adherence to the treaty, said a state’s obligation to protect women’s rights includes health in the context of gender-based violence.[49] Health services—preventive, curative, and rehabilitative—should be physically and economically accessible.[50]

International Covenant on Civil and Political Rights

Article 7 of the ICCPR—in line with article 5 of the Universal Declaration of Human Rights— states that no person can be subjected to “cruel, inhuman or degrading treatment.”[51] The UN Human Rights Committee, the ICCPR’s monitoring body, in its authoritative commentary on article 7, noted the “aim of the provisions of article 7 ... is to protect both the dignity and the physical and mental integrity of the individual,” including in medical institutions.[52] 

 

Barriers in the Criminal Justice System

Women and girls with disabilities, like others who experience sexual violence in India, face numerous barriers to accessing justice. These include stigma and victim-blaming, challenges in reporting, and poor access to support services, including timely medical treatment, counseling, and legal aid.[53]

Human Rights Watch found that these barriers are often exacerbated for women and girls with disabilities due to a lack of accommodations, and failure to account for disabilities by police, medical and court professionals, even when families, their lawyers, and engaged organizations identify disabilities and corresponding needs. 

For some women and girls with disabilities, reasonable accommodations—changes in ordinary procedures or practices to meet the needs of a particular person—are key in reporting sexual violence. In 15 out of 17 cases that Human Rights Watch documented, provisions requiring police officers and court officials to provide accommodations were simply not followed, even in cases in which women and girls had severe and visible disabilities and injuries that they reported to the police from the start.

Challenges Reporting Sexual Violence

Reporting sexual violence and seeking justice is not an easy decision for women and girls and their families. These challenges are exacerbated for women and girls with disabilities who experience unique stigmatization related to their disability, which can lead to social isolation and lack of access to information on legal rights and protections.

Stigma and Victim-Blaming

Stigma and victim-blaming against women and girls with disabilities may manifest in damaging stereotypes of hyper-sexuality or asexuality that have implications for their ability to access justice in cases of sexual violence.

For example, women with disabilities are often considered asexual, devoid of sexual desires, and unlikely to be considered sexually attractive.[54] They are often referred to as children, even as adults and despite having gone through puberty. Alternately, women with disabilities may be thought to be hypersexual and eager to engage in sexual activity.

These misconceptions about the sexuality of women with disabilities, coupled with the stigma related to having a disability, make it especially hard for women and girls with disabilities to get family and community support for justice.

Shreya Rani Dei, a field worker with Shanta Memorial Rehabilitation Centre (SMRC), an NGO working on disability rights in Odisha, described a recent case where a girl with intellectual disability was raped and “it was enough for the perpetrator to say he was sorry. The villagers took no further action since she is intellectually disabled and is therefore considered to have less worth than other women.”[55]

In 2014, in a remote village in Hooghly District, West Bengal, Noori, a 23-year-old Muslim woman with cerebral palsy and multiple disabilities—including the inability to speak or walk without a stick— reported that three neighbors raped her until she lost consciousness. Shampa Sengupta, director of the Sruti Disability Rights Centre, said that the community response to the crime reflected the stigma associated with disability:

The villagers took sides. They felt that ‘productive’ men in their prime were jailed due to an ‘unproductive’ woman who cannot even walk or talk properly.[56]

Stigma may lead families to conceal sexual violence. In August 2014, in a village in Herbertpur, Uttarakhand, Razia, a 13-year-old girl with an intellectual disability and difficulties speaking, was raped by her brother’s tutor. Shabana, Razia’s mother, supported her daughter to fight for justice and the family ultimately won the court case. Shabana explained her initial decision to conceal her daughter’s name:

When Razia was dropped home from her grandmother’s house by the tutor, she was bleeding heavily. We rushed her to the local hospital and they said that she had been hurt very badly. We were sent to Dehradun to the big government hospital. We were scared and worried. At the hospital, we gave a false name for our daughter and even for my husband. We were scared that if her name was given, and people knew she had [been raped], it would lead to our name going bad in the community. We didn’t know that such a thing could hamper the case going forward. We worked with a lawyer to clear this up when our case came to court.[57]

Though sexual violence is not unique to women and girls with disabilities, they may be more vulnerable to abuse[58] and have increased difficulty leaving abusive situations since they are more reliant on families and caregivers.[59]

In Delhi,[60] Odisha,[61] Tamil Nadu[62] and West Bengal,[63] social workers reported that sexual violence against women and girls with disabilities within families is prevalent but legal action is rare.[64] C. Murukesan, district leader of Tamil Nadu Association for the Rights of all Types of Differently Abled and Caregivers (TARATDAC), illustrated this point with a 2015 case of Preeti, a 15-year-old girl with an intellectual disability and cerebral palsy:

[Preeti] was sexually abused by her brother-in-law. She conceived and gave birth to a child. The parents were not interested in filing an FIR because they did not want to embarrass the son-in-law.[65]

L. Vincent Sundaraj, chair of the Child Welfare Committee in Krishnagiri District, Tamil Nadu, said that stigma relating to physical and mental disabilities restricts people from approaching police in sexual violence cases:

Instead, cases come to us from hospitals when girls come in for medical care. Social workers, journalists and child welfare committees are more often the ones to take cases to the police.[66]

Lack of Access to Information

People throughout India are often not aware of their rights. But even in areas where civil society and government initiatives seek to educate women and girls about their legal rights, this information may not reach those with disabilities due to the lack of information on laws and processes in accessible formats.[67]

In 16 of the 17 cases documented by Human Rights Watch, women and girls with disabilities and their families were not familiar with disability-specific protections under the 2013 amendments or the POCSO Act, 2012. For instance, Nafisa, a woman from Odisha with difficulties hearing and speaking, was 19 when she was raped while attending a tailoring class. She said that at the time of the incident, she did not go to the police because she did not know that sexual violence was a criminal offense:

One day, my teacher was finishing some work on the sewing machine in the veranda and asked me to wait inside the house. I was alone inside and that was when her brother forced himself on me. I did not know that if someone raped me, I could go to the police.[68]

Mansoor Ali, director of the Graham Bell Centre for the Deaf in Hooghly District, West Bengal, explained the importance of providing support to ensure sexual violence is reported:

In rural places where [disabled persons] organizations like ours are not active, families do not go to the police and report when a child has been raped. If they do not know the law and cannot read and write, they do not have the courage to go forward. In these cases, we support women and girls with disabilities to get relief.[69]

Lack of Accommodations

Women and girls with disabilities may experience barriers communicating about sexual violence. India’s Ministry of Health and Family Welfare stated that, “they face [challenges] in expressing themselves in a system that does not create an enabling environment to allow for such expression.”[70]

In order to address the barriers faced by people with disabilities, national legislation in countries including India has incorporated the concept of “accommodation”—a change in ordinary procedures or practices to meet the needs of a particular person.[71] The UN Department of Economic and Social Affairs has stated that this approach recognizes that “discrimination can arise from a failure to take positive steps to ensure that disadvantaged groups benefit equally from services offered to the general public.”[72] Widely accepted in the human rights field, reasonable accommodation stands at the core of the Convention on the Rights of Persons with Disabilities.[73]

For women and girls with disabilities, the accommodations under India’s 2013 criminal law amendments and POCSO may be integral to accessing justice. Mamta Govil, a social worker at the Latika Roy Foundation in Dehradun, said that the organization worked with Razia, the 13-year old girl with an intellectual disability and difficulties speaking, to recount her rape by her brother’s 17-year-old tutor:

Generally, in cases like Razia’s where the child has an intellectual disability and unclear speech, people assume that she will not be able to narrate what happened to her. That is just not true. With Razia, the challenge was even greater given what she had been through—she was in a lot of pain and had just had 24 stitches in her vagina. She was traumatized.  But, as we saw with Razia, you need time and you need patience, but it is possible. Our counselor took a number of sessions with Razia. She used creative techniques, like using a doll. Razia was clear and consistent in her account of the horror she faced.[74]

Special educators and interpreters may need to employ different, creative strategies in order to facilitate accounts of sexual violence by women and girls with diverse disabilities. For example, Mehtab Zia Shaikh, vice principal of the Bombay Institute for Deaf and Mute, told Human Rights Watch that she worked with Rekha, a 24-year old deaf woman, who could not read, write or speak sign language. They developed a trust and channel of communication through gestures and repetition, which allowed Rekha to communicate her sexual abuse in detail during her trial in 2014.[75] On February 6, 2018, Rekha received a judgment in her favor. The accused was convicted of wrongfully confining and raping Rekha, He was sentenced to life imprisonment.[76]

The staff at Anjali Mental Health Rights Organization in Kolkata, West Bengal, an organization that works closely with women and girls with psychosocial disabilities, described the importance of accommodations in supporting women and girls with psychosocial disabilities to communicate effectively. Sudeshna Basu, Deputy Director, said: 

When we work with women and girls with psychosocial disabilities, there is a process that can help them to communicate. A person whom she knows and trusts can ask questions in a way that she can understand. A stranger who has never met her before may not be able to understand what she is trying to say.[77]

Accommodations may be integral to facilitating access to justice for women and girls with disabilities.  However, in 15 of 17 cases that Human Rights Watch documented, provisions requiring police officers and court officials to provide accommodations were simply not followed, even in cases when women and girls had severe and visible disabilities and injuries that they reported to police when cases were first reported.

While POCSO and the 2013 amendments call for police and judicial authorities to employ special educators, the human resources required to implement the law remain lacking. Poonam Natarajan, former chairperson of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities for India’s Ministry of Social Justice and Empowerment, said:

The issue is that there are no lists of special educators or support personnel on hand with the police or the courts. When I was heading the National Trust, I was trying to work towards getting special educators empaneled, but the government was not responsive. You cannot just use a special educator, they need to be trained to work with people across disabilities. If she is a special educator for the blind, then how will she know how to support someone with cerebral palsy? The government should create lists of special educators and the Rehabilitation Council of India should draw up a training curriculum for special educators.[78] 

Meenakshi Balasubramanium, from Equals—Centre for Promotion of Social Justice, a Chennai-based organization that works for the rights of people with disabilities, said that the lack of accommodation may serve as a deterrent or delay efforts to seek justice:

In most cases families don’t go directly to the police to report cases of abuse of women with disabilities because they are not sure what kind of support they will get, whether the police will have a sign language interpreter, or a special educator. Instead, they contact a DPO [disabled persons organization] and go only through them because families know that if they require any accommodation, the DPOs will immediately provide them the support that they need.[79]

Difficulties Engaging with Police

All police stations are required to have women police officers available around-the-clock to record complaints.[80] For women and girls with disabilities, who confront additional stigma and are often discredited or infantilized, it is particularly important to have a positive interaction with police to build faith in the criminal justice system.

Human Rights Watch found that in 16 out of the 17 cases examined for this report, women and girls with disabilities, their families and advocates, faced challenges at multiple stages of engaging with the police, including registering accurate complaints and ensuring competent investigations.

Difficulties Registering the FIR

People throughout India face police inaction and outright refusals to register crime complaints.[81] Women and girls with disabilities who seek to register complaints of sexual violence are often at heightened risk of refusal due to the unique stigma associated with their sexuality and disability. According to Niranjan Behera, president of Odisha Viklang Manch, the state organization of persons with disabilities, “Police are generally insensitive towards women. When it comes to their behavior towards women with disabilities, it is even more so.”[82]

Susmita, a then 26-year-old woman with a psychosocial disability, from Kolkata, West Bengal, told Human Rights Watch she was sedated and gang raped by four men who lived in the building next door in February 2014. However, according to her, the police refused to believe her or register her case on account of her disability. Susmita said:

I approached the police. The police asked me very nasty things like how it felt for me. I mean—I told them I was totally unconscious, so how would I know? The police said things like: “She’s mental, why should I pay attention to her?” “She’s a gone case, why should I listen?”[83]

According to Susmita, the police only responded when she took her case to the media. After her case was covered in the news, Susmita said that she was interviewed by a woman police officer and that the perpetrators were arrested.[84]

In December 2014, in Krishnagiri District, Tamil Nadu, Lakshmi, a 16-year-old girl with difficulties hearing and speaking was reportedly gang raped by four men from her village. Namburajan, an activist with the National Platform for the Rights of the Disabled (NPRD) in Tamil Nadu, described Lakshmi and her family’s experience as they tried to register an FIR:

Lakshmi’s father carried her for 14 kilometers [8.5 miles] on his shoulders to the nearest bus station to bring her to the government hospital. The police were called to the hospital but refused to file the complaint. Though the incident took place on December 25, 2014 and the father went to the police that very day, the police refused to lodge an FIR until January 2, 2015. They filed the FIR only when the Tamil Nadu Association for the Rights of All Types of Differently Abled and Caregivers (TARATDAC) held a protest demonstration. Even then, the FIR did not mention that Lakshmi had been gang raped. It only mentioned that she was raped.[85]

Anjali, a medical doctor, said that she felt well-supported when she approached police in Dehradun to report the case of her daughter, Meera, a 38-year-old woman with cerebral palsy and severe developmental delays: 

The [station house officer] was very sensitive. He immediately had the room emptied after he spoke to me. He got me a lady IO [investigating officer] who was superb and he told her: ‘Get things done as quickly as possible. She is very keen to return home.’ They met with us alone in a room so that Meera could be on one side and I on the other—that way she could see me but she could not hear me. I was whispering very softly so Meera didn’t hear me recount the story. They finished the report in one hour.[86]

The station house officer (SHO) at the Dehradun Kotwali police station explained his response: “In these cases, it is not only about procedures but also about humanity. I think of my role as a police officer, but also think as a husband and a father.”[87]

In rape cases, all women and girls, including those with disabilities, have the right to file a complaint outside the police station, at a location of their choice.[88] POCSO sets forth obligations for police when engaging with victims, including ensuring that no child is detained at a station overnight.[89] Most women and girls with disabilities interviewed for this report spent extended hours at the police station. Some were held overnight.

In Hooghly District, West Bengal, Chandra, a 12-year-old girl with cerebral palsy was allegedly kidnapped, raped, and found bleeding in a nearby field in June 2013. Despite her obvious disabilities and the visible injuries she had sustained, Chandra and her family had to wait overnight at the police station. Her father, Ashim, recounted:

The police saw bite marks and scratch marks all over her body. They questioned me about what happened and wrote it down. We reached the police station at 9 p.m. They told us to leave Chandra and go. We did not leave. How could we leave her alone? We stayed. They took us from the police station to the court at 9:00 the next morning. We stayed all night with Chandra in the station.[90]

The treatment Chandra and her family received—a violation of Indian law—is not an isolated incident. In 2015, Noori, a 23-year-old woman with cerebral palsy was reportedly gang-raped and thrown from a rooftop. According to Shampa Sengupta from Sruti Disability Rights Centre: “The police detained her and her mother the whole night. The family was very nervous and abided by what the police officer said.”[91] Later, when local advocates followed up with police, they were told that Noori was held in order to protect her—on the grounds that she may have been killed if she was sent to the village that night. Activists said that police never offered this explanation to Noori or her mother.[92]

Failure to Record a Disability  

Some women and girls with disabilities and their families said they were excluded from any accommodations due to inability to substantiate a disability.[93] Absent government certification of disability, when these families went to the police to report the crime and file a complaint, police did not include critical information on the woman’s disability in their reports, even when a family member reported the disability or when the disability was apparent. As a result, they did not receive the accommodations provided by the law.

In October 2015, two men reportedly raped Maneka, a 15-year-old girl with an intellectual and physical disability from Delhi. Her family did not receive a copy of the FIR or the medical record on the day it filed charges and Maneka was medically examined. Once Maneka’s lawyer was able to obtain the charge sheet, she noticed significant errors: although Maneka was 15 on the day she was raped, her age was misreported as over 18; and, since the family did not have a disability certificate, the police refused to report her intellectual disability and visible physical disability, despite being informed by the family.[94] Maneka’s sister, Kanika, said:

We told the police she has a mental disability and she is physically handicapped—one of her hands does not work and one of her legs is also dysfunctional. You can see her disability but it was still not recorded in the FIR.[95]

Such errors have had a profound impact on Maneka’s case. Not only did the errors in recording her age exclude Maneka from protections under POCSO, exclusion of her intellectual and physical disabilities also undermined evidence collection. Although required under both POCSO and the 2013 amendments, Maneka did not receive support from a special educator in giving her statement and her testimony was not videoed. As a result, she has faced significant challenges in litigating her case. Priya, her lawyer, said:

Maneka has an intellectual disability. She has had problems remembering things later. Maneka’s sister is a school teacher and supported Maneka to give her statement, but she did not know the procedures so did not ask for a special educator or video recording. After that first day, Maneka does not talk about the case at all.[96]

Maneka’s family said that she is traumatized by repeated visits to the court.[97] Her intellectual disability makes explanations particularly challenging. The video recording accommodation for women and girls with disabilities was introduced precisely for cases like Maneka's in order to relieve the strain of repeat testifying.

In order to ensure accurate registration and investigation of crime complaints, as law requires, the victim, family or other informant should receive a copy of the information recorded with police, free of cost.[98] This requirement ensures that victims and their advocates have a safeguard against inaccurate registration of crime complaints or subsequent revision of the FIR due to pressure from the accused. In Maneka’s case, her lawyer received the FIR only months later.

Despite the errors in Maneka’s case and the trauma experienced by Maneka and her family, with the support of a strong advocate, by March 2018 Maneka received a verdict in her favor. Each of the perpetrators of the gang rape received a prison sentence of 21 years and a monetary penalty of 50,000 Rupees (USD 772).

Lack of Police Training 

Even when attempts to provide accommodations are made with good intentions, they may be inappropriate due to lack of police training and access to experts, such as special educators.

For instance, in Delhi, Pooja, an 11-year-old girl with an intellectual disability was taken to the police station in August 2013 by her father after they reported that a neighbor had raped her. The police brought in a sign language interpreter to assist in the interview, but this support proved futile. Pooja cannot speak due to a neurological condition, but she is not deaf and has no knowledge of sign language. Muralidharan, secretary of the National Platform for the Rights of the Disabled, said:

The lady officer brought in a sign language expert to try and communicate with the girl.… The police could have simply asked the family about her disability. But there is a very common misconception that a person who cannot speak is also deaf, so the exercise of bringing in a sign language interpreter to assist was futile. A special educator could have helped.[99]

A memo submitted by the National Platform for the Rights of the Disabled, Sruti Disability Rights Center, and CREA to the National Commission for Women reflected upon the shortcomings in Pooja’s case: “The intent here is not to find fault with the IO [investigation officer] but to point out the general lack of awareness among the police about these new provisions.”[100]

Debashree Sabuj, deputy police commissioner for women in Kolkata, attributed many of these shortcomings to a lack of training and information among police officers:

We have had no training. When we meet a disabled woman, we may not know how to speak to her properly. The police are not cruel. In most cases the police are simply ignorant. It is not that we don’t want to believe them, but we also worry that if we make a mistake, the wrong person will be punished. The police need education and we need to be sensitized on how to handle these cases.[101]

While training modules at some police academies incorporate gender sensitive material, there are hardly any regular courses or follow up to ensure police have updated information on laws and policies to effectively support cases of people with disabilities, particularly women or girls, who have faced abuse and violence. Sanjay Gunjyal, inspector general of police from Uttarakhand, said training is the first step, but it is not enough: 

Whenever there are new amendments or changes in the law, it is very important that all the investigating officers or police officers are aware. They should be properly trained and that training should not be limited to the law. They should also be sensitized to the emotional and the psychological needs of the victim and how to work with women and girls with disabilities. It is important to sensitize every officer—from top to bottom.[102] 

Gunjayal intervened in the case of Razia, a 13-year-old girl with an intellectual disability and difficulty speaking, who was raped in 2014. Violating POCSO, police had asked Razia to sit next to the perpetrator during the DNA testing, which was extremely traumatic for her. Rizwan Ali, the lawyer from the Latika Roy Foundation, an organization supporting the case, immediately asked the police to separate them.  He said:

We knew that such an error could happen in other cases too. So we approached the then deputy inspector general, Sanjay Gunjyal, and he issued a curricular to all police stations in his range to ensure that such a problem in investigation would not occur.[103]

Lack of Legal and Support Service Referrals

The Supreme Court of India has ruled that police are required to ensure that women and girls who suffer sexual violence have access to legal representation.[104] This includes maintaining a list of advocates willing to act in these cases and making this resource available for victims who do not have a lawyer. To ensure that victims are questioned without delay, in cases of sexual violence, the Supreme Court has authorized advocates to act at the police station before leave from the court is sought or obtained.[105]

In cases of child sexual abuse, POCSO rules require police to inform the child and their parent or guardian of the right to representation and to support services, including counseling. Police should help families who want to pursue such services contact service providers.[106] Human Rights Watch found police do not always carry out these duties.

In the cases of sexual violence covered in this report, most women and girls with disabilities and their families reported difficulties in securing legal representation.

Shampa Sengupta, director of the Sruti Disability Rights Center in West Bengal, described reaching out to Noori, a 23-year-old woman with cerebral palsy, who was gang-raped in Hooghly District: “We contacted the father and he was a fighter—he was very interested in engaging with us. The police had not told them that they are entitled to legal assistance.”[107]

Poonam Natarajan, former chairperson of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities, said:

The problem here is two-fold: first, people with disabilities don’t know that they have free legal aid; and second, the legal service authorities are not trained to handle disability cases. We need to activate legal services authorities.[108]

Barriers to Adequate Medical Treatment, Forensic Examination

Healthcare providers play a dual role in the response to sexual violence: they provide therapeutic care and assist in criminal investigations.[109] Under Indian law, all hospitals, whether public or private, must provide first aid or medical treatment to survivors of sexual violence, and prompt medical examination and reporting, consistent with established legal standards, free of cost.[110] Failure to uphold these responsibilities is punishable with a fine, imprisonment, or both.[111]

Consistent with legal requirements,[112] police took Maneka, a 15-year-old girl with intellectual and physical disabilities, to the hospital. However, once there, neither Maneka nor her mother, Soumya, received information on the examinations that took place. Soumya said: “They took Maneka in for the examination all alone—she was scared. No one explained to me what tests they were doing.”[113]

POCSO requires that medical examinations take place in the presence of the parent of the child, or another person the child trusts. Failure to follow these provisions may exacerbate the trauma of sexual violence faced by girls like Maneka.[114]

In 2014, the Ministry of Health and Family Welfare issued guidelines for medico-legal care for survivors of sexual violence to health care professionals.[115] These include specific requirements for medical treatment of women and girls with disabilities. They require medical professionals to attend to the kind, nature, and extent of disability; provide necessary accommodations, including making arrangements for interpreters or special educators; ensure that they take consent and medical histories directly from survivors; provide information on medical procedures in a manner the survivors can understand; and prohibit the use of the “two-finger test.”[116]

However, according to health rights groups, only nine states have so far adopted the guidelines, which Human Rights Watch found medical professionals often flout.[117]

For instance, the guidelines eliminate what is commonly known as the “two-finger test,” a practice where the examining doctor notes the presence or absence of the hymen and the size and so-called laxity of the vagina of the rape survivor, to assess whether girls and women are “virgins” or “habituated to sexual intercourse.” This evidence has been used during trials to assert that the rape survivor had “loose” or “lax” morals.[118] The new guidelines limit internal vaginal examinations to those “medically indicated,” such as when it is done to diagnose infection, injury, or presence of a foreign body. However, Human Rights Watch has found that doctors continue to conduct the invasive, humiliating, and unscientific finger test to make degrading characterizations such as “habituated to sex.”[119]

Challenges in the Courts

Assistance During Trial

Attending court can be extremely traumatic for survivors of sexual violence. The language used in courtrooms by lawyers and judges in cases of rape and assault can be derogatory toward survivors. Courts themselves can be intimidating and confusing for survivors, and cross-examination may be particularly stressful.

This trauma may be heightened for women and girls with disabilities because of challenges navigating spaces that are often inaccessible, and if legal processes are not explained by lawyers and judicial officers in a manner that is accessible to them.

Shampa Sengupta, a disability rights activist, greets Kanchana, a 19-year-old woman with an intellectual disability, her mother, and Kanchana’s young son. Kanchana was raped on multiple occasions by a man from her village. Four years later, the case has been closed and their application for compensation is pending (West Bengal).

© 2016 Shantha Rau Barriga/Human Rights Watch

For instance, Diya, the mother of Kanchana, a 21-year-old woman with an intellectual disability, recounted a simple misunderstanding when the police asked Kanchana to wait in the plaintiff’s witness box in the courtroom, which proved deeply traumatic:

When they led Kanchana away from me, she cried and screamed. The police explained that she would be able to see me and that they would bring her straight back to my lap. She couldn’t understand. She was terrified and thought she was being taken to a lock up.[120]

Women and girls with disabilities may also face the added trauma of their accounts being discredited on the basis of their disability.[121] An examination of judgments from India’s appellate courts by legal researcher Saptarshi Mandal illustrates a systematic disregard for and devaluation of the testimonies of women with disabilities. Mandal concluded that this devaluation is embedded in evidentiary standards that define competency to testify and govern testimony of witnesses who are unable to speak.[122]

Meera, a 38-year-old woman with cerebral palsy leading to developmental delays, regressed from a communication level of an 11 to a three-year old after she was raped. Meera testified in court, with the assistance of a special educator. The magistrate, however, refused to accept her testimony on the grounds that she did not use adult language. Her mother, Anjali, described the day that Meera testified:

Meera has given her statement in court and the psychologist interpreted it. The psychologist asked her, ‘What did the bad man do?’ And she said, sobbing, with tears running down her face, ‘The bad man put his sussu’ [child term for penis]—and she pointed down. She couldn’t stop crying and the judge said—‘I will not accept that word.’ My daughter has barely managed to recover the communication of a 3-year-old. Even earlier she would not have known the anatomy of a man. The interpreter, a psychologist who knows Meera well, explained that it is a perfectly acceptable childlike word.[123]

The judge called for Meera to return to court and testify in adult language, but her mother has refused. Anjali said:

She gave her testimony and that is the best she can do. I cannot put her through the trauma again. That day I could not get her into the car. She was letting her hands fly all over, she nearly broke the window of the car. I almost could not hold her. She loathes going to the court—she is terrified. There is no need for this.[124]

Need for Witness and Victim Protection

Women and girls with disabilities—like other women and girls—may face pressure from perpetrators, communities, and even their own families to not seek legal redress. Karuna, a woman with low vision, did not tell her family after she was raped by a blind man. She explained, “He threatened me not to tell anyone. I was scared so I didn’t tell anyone what had happened.”[125]

In cases where the perpetrator of sexual violence is a family member, Human Rights Watch found that women and girls with disabilities have had to flee their homes in order to protect themselves from ongoing violence and retaliation. Santoshi Kansari, a social worker who has been working to promote the rights of women and girls with disabilities in Chhattisgarh for the past five years, described the plight of two sisters, both of whom have physical disabilities from polio. These women were forced to go into hiding in order to escape pressure and threats from their family and community:

The brother was raping both of his sisters. One is 39 and the other is 25 years old. They lived with their widowed mother and, before dying, the father left bigger pieces of farmland for his daughters. They were disabled so he wanted to create some security for them. In retaliation, the brother beat them and sexually abused them. I tried to intervene but the villagers and the panchayat [village head] aligned with the brother. The girls were afraid they would be killed if they tried to report. Two years ago, I brought them out of there, and the sisters are hiding in another village. They are afraid to speak up.[126]

Since India has no national victim and witness protection program, retaliation for reporting instances of violence can have a particularly devastating impact on women and girls with disabilities who are ostracized by their families and communities on whom they rely for everyday support. Even in cases where women and girls with disabilities had support from their families, family members described facing pressure not to report cases of sexual violence. Women, girls and their families are particularly at risk of pressure, threats and retaliation when the perpetrator is considered to have higher social standing.

Ashim, the father of Chandra, the 12-year-old girl with cerebral palsy and high support needs, was advised not to pursue legal action by the pradhan [village headman] and other local leaders when his daughter was kidnapped, raped and left profusely bleeding in a nearby field by a politically well-connected man from the village. “They tried to force me not to press charges,” he said. “I refused to give in.”[127]

Delays in Compensation

India’s Code of Criminal Procedure requires all state governments, in consultation with the central government, to prepare a scheme for victim compensation. Based on court recommendations, district or state legal service authorities are tasked with deciding the amount of compensation.

The Code of Criminal Procedure also provides compensation in cases where no trial takes place because the offender cannot be traced or identified.[128] In cases of sexual violence perpetrated against a child, a special court may pass an order for interim compensation at any stage after the FIR is registered or final compensation when the case ends. State governments must pay compensation within 30 days of a special court order.[129]

In 2013, the central government established the Nirbhaya Fund for schemes aimed at the prevention, protection, and rehabilitation of women. They allocated 3,000 crore rupees (US$454 million) from 2013 to 2017,[130] most of which remains unutilized. No specific fund for persons with disabilities exists in India and women with disabilities are not explicitly mentioned in the Nirbhaya Fund. Meenakshi Balasubramanium, from Equals—Centre for Promotion of Social Justice, said:

In the Nirbhaya Fund they should have put some amount aside for women with disabilities because accessibility and reasonable accommodation involves costs, but these aspects of access to justice for women and girls with disabilities have not been taken into consideration.[131]

Human Rights Watch found that even in the cases of sexual violence resulting in extreme injury, trauma, and economic hardship as a result of childbirth, women and girls with disabilities, compensation was awarded in only 5 of the 17 cases covered.    

Noori, a 23-year-old woman with cerebral palsy and multiple disabilities, applied in 2014 for compensation to cover her medical expenses after she was reportedly gang-raped by three neighbors. At time of writing, she had not received any assistance from the state.

Obtaining compensation can be integral to the survivors’ recovery and rehabilitation.

Anjali, mother of Meera, a 38-year-old woman with cerebral palsy, recounted the devastating impact of her rape on Meera’s developmental profile as the primary reason why she continued to seek compensation for her daughter:

After she was raped, Meera is in so much pain that she has shut out the world. Her weight has dropped by 15 kilos (33 pounds). She has terrible tantrums. She does not leave the house. Her communication level has dropped. She will need extensive therapy to regain her potential. She can do it. That is why I am fighting for compensation for my daughter. I am fighting for her ability to live again. She grew, she reached her potential and we want that back—we can get it back, but we need help.[132]

Given the strong links between gender, poverty and disability,[133] compensation is particularly important for women and girls with disabilities and their families, especially those who live in rural areas. In 2014, Diya and Kanchana applied for compensation under a West Bengal scheme. After Kanchana was reportedly raped and decided to carry her son to term, Diya had no choice but to leave her work. Now, as the primary caregiver for her daughter and grandson, she is unable to leave the home. The case was closed in 2016 and their application for compensation remained pending at time of writing.

Even in cases where compensation has been awarded, it may not reach the person in need. After Razia, then a 13-year-old girl with an intellectual disability and difficulties speaking, was raped in August 2014, the family pursued justice through the courts—and won. Razia was granted compensation of two lakh rupees (US $3,100). However, despite this favorable order, the money has yet to reach the family. Rizwan Ali Fahim, the lawyer from Latika Roy Foundation, who assisted in Razia’s case, said:

On January 3, 2016, the district legal services authority issued the order that [Razia] should get two lakh rupees as compensation. It has been more than [two years] and the money has not been received. The accused was jailed, the case was closed in [Razia’s] favor—but justice is incomplete.[134]

The One-Stop Crisis Center

A major program under the Nirbhaya Fund, established in 2013, is the One-Stop Crisis Center Scheme, which calls for places across the country where integrated services—police assistance, legal aid, medical and counseling services—are available to victims of violence.

Governed by standard treatment and examination protocols, these can play a key role in ensuring care and collection of forensic evidence for survivors of sexual violence.[135]

In September 2015, in rural Karnataka, Latha, then a 16-year-old Dalit girl with epilepsy, was reportedly raped by a neighbor. Her relatives brought her to the hospital, and medical authorities helped the family contact the local one-stop crisis center. Rekha, the protection officer responsible for overseeing the one-stop crisis center, described the coordination between the center and police: she was not only able to persuade the family to lodge a formal complaint, but she assisted police in interviewing Latha.

The father was not ready to file the FIR but when Latha’s case came to my attention, I immediately called the police and registered the case. We are mandated to report such a case. I went with the police to the hospital to visit Latha. At that time, she was not able to name the perpetrator. The police initially made out the FIR with ‘perpetrator unknown.’ In order to get more information, they visited her village. Then, they returned to the hospital again and tried to take a statement. They did not have a lady police officer so I worked with them. They video recorded this process. Finally, Latha named the perpetrator and burst into tears.[136]

More needs to be done to ensure that women and girls with disabilities and their families are aware of the services available in one-stop crisis centers, and that staff are trained to support the rights and needs of women and girls with disabilities.

The document issued in 2015 by the Ministry of Women and Child Development to guide implementation of the One-Stop Center Scheme lacks provisions for accessible infrastructure, communication assistance, or any other reasonable accommodations. The budget guidelines provided in Annexure II of the document, moreover, do not make provisions for audio-visual recording of statements and other accommodations for women and girls with disabilities mandated under the 2013 amendments and POCSO.[137]

A sign of a government-run one-stop crisis center in Bhubaneswar, Odisha. The one-stop crisis centers are places where integrated services—police assistance, legal aid, medical and counseling services—are available to victims of violence. These centers can play a key role in ensuring care and justice.

© 2016 Shantha Rau Barriga/Human Rights Watch

 

Full Recommendations

Promising policy initiatives in India often falter due to poor implementation. Legal provisions designed to support access to justice for women and girls with disabilities in cases of sexual violence are no exception.

India’s government should take urgent action—in collaboration with state governments, police, medical treatment and forensic facilities, justice system officials, child welfare committees, national and state commissions for women, legal aid services, and disabled people’s organizations and other relevant civil society organizations to ensure access to justice for women and girls with disabilities.

To the Central Government and State Governments

Reporting Sexual Violence

  • Enforce the Criminal Law Amendment Act, 2013, and policies announced to facilitate access to justice for survivors of sexual violence by:
    • Implementing the 181-national helpline and ensuring 24-hour access to support for women and girls across disabilities seeking relief in cases of sexual violence, including through activation of text-based services.
    • Designing a certification course to equip support people (“special educators”) to work with persons with different disabilities. Require that special educators appointed by police, judiciary and Child Welfare Committees are trained and certified.
  • As called for under section 7 of the Rights of Persons with Disabilities Act, 2016, conduct a public information campaign to create awareness, including among women and girls with disabilities and their families, about their rights and the procedures for accessing justice in cases of sexual abuse.
    • Ensure that information is made available in accessible formats, including braille, audio, sign language, video and easy-to-understand formats.
    • Issue a directive to all gram panchayats (village councils) requiring them to disseminate accessible information on rights and procedures for accessing justice to all households.
  • Ensure that Child Welfare Committees are equipped to meet the needs of girls with disabilities who are victims of sexual violence, by:
    • Ensuring that personnel are sensitized to the needs of girls with disabilities.
    • Appointing special educators and interpreters to support Child Welfare Committees in assessing and meeting the rights and needs of girls with disabilities.

Medical Treatment and Examination

  • Adopt and implement the Ministry of Health and Family Welfare Guidelines and Protocols for Medico-Legal Care for Survivors/Victims of Sexual Violence.
    • Ensure that medical professionals are trained to provide adequate accommodations to women and girls with disabilities.
    • Appoint special educators and sign language interpreters to ensure that hospitals and medical centers can provide accessible services.
    • Hold periodic trainings for doctors, paramedics, nurses and other health professionals on these guidelines.
    • Ensure that medical forms and consent forms are available in local languages, easy-to-read and other accessible formats.
  • Ensure that government and private hospitals that receive government subsidies are accessible to women and girls with disabilities, in line with universal design as defined by article 2 of the Convention on the Rights of Persons with Disabilities.[138]
  • Enforce 2014 Health Ministry Guidelines on the use of the “two-finger test” and its variants from all forensic examinations of female survivors, as it is an unscientific, inhuman and degrading practice.
  • Call for the Indian Medical Association, Indian Council of Medical Research, and Medical Council of India to include the particular needs of women and girls with disabilities in all existing and forthcoming training modules and medical standards for training medical students on treating and examining victims of sexual violence.

Compensation and Rehabilitation

  • Ensure all states adopt the minimum amount mandated by the central government for compensation for victims of rape. 
  • Direct district and state legal service authorities to grant compensation that accounts for the particular needs of women and girls with disabilities.
  • Ensure that shelter homes and short stay homes for women survivors and women in distress are accessible for girls and women with disabilities.
    • Train personnel responsible for running shelter homes and short stay homes on the rights and particular needs of women and girls with disabilities.
    • Make shelter homes and short stay homes physically accessible to women and girls across disabilities.
    • Ensure that the duration of stays in shelter homes and short stay homes are determined with the consent of the woman and girl seeking relief.

Nirbhaya Fund

  • Allocate specific funds within the Nirbhaya Fund to support accessibility and reasonable accommodation for women and girls with disabilities.
  • Create transparent mechanisms for disbursement of the Nirbhaya Fund.
  • Ensure that one-stop crisis centers are properly equipped and accessible to women and girls with disabilities, including via training for staff and medical professionals.

Systematic Data Collection

  • Within the National Crime Records Bureau, disaggregate data on the basis of gender, disability and age to be able to facilitate analysis of crimes of sexual and gender-based violence against women and girls with disabilities, and to inform government policies, programs and services to better address their needs.

 

To the Judiciary

  • Ensure that Fast Track Courts and Family Courts are accessible in terms of physical access, communication and procedural aspects.
  • In consultation with national and state judicial academies, expand training for trial and appellate court judges and public prosecutors on the rights of survivors with disabilities in cases of sexual violence to include:
    • Training on provisions pertaining to women and girls with disabilities under the Criminal Law Amendment Act, 2013, and the Protection of Children from Sexual Offences Act, 2012.
    • Sensitization on supporting persons with disabilities to provide accurate testimony in cases of sexual violence in a manner least traumatic for the survivor and upholds the fair trial rights of the defendant.
  • Ensure magistrates have specific training on accommodations for people with disabilities.
    • Appoint trained special educators and interpreters to ensure that accommodations are available to women and girls with disabilities in all judicial proceedings.
    • Expedite interim compensation for women and girls with disabilities who are victims of sexual violence to meet immediate needs.

 

To the Union and State Home Ministries, and Police Services

  • Provide accessible information to women and girls with disabilities about their rights in cases of sexual violence.
    • Appoint special educators and interpreters to ensure that accommodations are available and provided.
  • Issue clear, consistent and unambiguous directives to division and district supervising officers to ensure that an FIR be registered in every case in which police receive information that on its face suggests the commission of sexual violence, including sexual violence against women and girls with disabilities.
    • Ensure that information concerning the disability of the woman or girl is recorded in the FIR, whether or not they can produce a disability certificate.
  • Strictly enforce the requirement that a completed FIR be read to the complainant and that they receive a free copy. Ensure the information in the FIR is communicated in an accessible manner for women with disabilities or parents of children with disabilities.
  • Increase the number of women police officers, their promotion opportunities, and the number of women’s police stations. Ensure that women police officers are sensitized to the rights and particular needs of women and girls with disabilities, including how to support victims of sexual violence, record their claims, and interview them for the purpose of crime investigation.
  • Instruct police stations to create a database of special educators and legal aid providers to support women and girls with disabilities who seek relief in cases of sexual violence and other crimes.
  • Organize special programs for police related to prosecuting cases of sexual violence perpetrated against women and girls with disabilities. Training content should include:
    • Training on provisions pertaining to women and girls with disabilities under the Criminal Law Amendment Act, 2013, and the Protection of Children from Sexual Offences Act, 2012.
    • Sensitization on supporting persons with disabilities to register complaints, access appropriate and effective accommodations, receive immediate medical attention and access to legal counsel and other support services.
    • Mandatory training for investigating officers regarding sexual violence. Training should include investigative methods applicable to sexual violence cases, including accommodations for persons with disabilities, working with traumatized victims, protecting victims from harassment, gathering forensic evidence, and collecting and preserving evidence.

To the Indian Parliament

  • Enact a victim and witness protection program that includes protection for women and girls, including women and girls with disabilities, who face retaliation for reporting sexual violence. The law should direct the central and state governments to adequately fund witness protection programs.

To the National Legal Services Authority

  • Expand the National Legal Services Authority (Legal Services to the Mentally Ill Persons and Persons with Mental Disabilities) Scheme, 2010, to include all women and girls with disabilities. Revise the language of the scheme so that it is consistent with the Convention on the Rights of Persons with Disabilities.
  • Raise awareness among women and girls with disabilities and organizations of people with disabilities about access to free legal services in cases of sexual violence.
  • Train state and district legal services authorities on the rights and particular needs of women and girls with disabilities.

To National and State Commissions for Women

  • Ensure that women’s and children’s helplines are available across the country, 24 hours a day and trained to support women and girls with disabilities.
    • Consult people with diverse disabilities and their representative organizations and disability rights experts to ensure that helplines are accessible for persons with different disabilities. For instance, phone helplines should be text-enabled for women who are deaf or hard of hearing.
  • Coordinate action pertaining to access to justice for women and girls with disabilities between the Office of the Commissioner for Persons with Disabilities and the National and State Commissions for Women.

To the Australia, Canada, European Union, United Kingdom, United States, Other Concerned Governments, Foreign Donors, and Aid Agencies

  • Encourage the Indian government to respect its international obligations under the Convention on the Rights of Persons with Disabilities, with a particular emphasis on access to justice:
    • Consistent with article 13, call for effective access to justice for persons with disabilities on an equal basis with others, including through the “provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.”
    • As prescribed by article 16, call for all appropriate measures to protect persons with disabilities from all forms of exploitation, violence and abuse, including by providing information on how to avoid, recognize and report instances of exploitation, violence and abuse.
  • Provide increased support for disabled persons organizations in India to engage in activities to facilitate access to justice for people with disabilities in cases of sexual violence.

 

Terminology

Consistent with the language of the Convention on the Rights of Persons with Disabilities (CRPD), this report refers to “women and girls with disabilities” rather than “disabled women and girls.”[1] The CRPD acknowledges that disability is “an evolving concept,” but also stresses that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”[2] As explained by the World Health Organization (WHO), “defining disability as an interaction means that ‘disability’ is not an attribute of the person.”[3] Progress on improving social participation can be made by addressing the barriers that hinder persons with disabilities in their day-to-day lives.

The terms below acknowledge the complex interactions between a person and social norms that comprise the experience of disability. Common language references to disabilities also appear in direct quotes when this language has been used by interviewees.

Cerebral palsy: Cerebral palsy is a neurological condition that affects body movement, muscle control, muscle coordination, muscle tone, reflex posture and balance. It can also impact fine motor skills. Every case of cerebral palsy is unique to the individual. Other complications such as cognitive delay, seizures and vision or hearing impairment also commonly accompany cerebral palsy.[4]

Child: As per the Convention on the Rights of the Child, any person under age 18.[5]

Discrimination: Under India’s Rights of Persons with Disabilities Act, 2016, “discrimination” in relation to disability means “any distinction, exclusion, restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field and includes all forms of discrimination and denial of reasonable accommodation.”[6]

First Information Report (FIR):  A document with information about the commission of a cognizable offense given to a police officer, which sets the process of criminal justice in motion. It is only after the FIR is registered with the police that they take up investigation of the case.

Gram Panchayat/Panchayat: Village-level administration, usually elected officials, responsible for preparing and executing plans for economic and social development.

Intellectual disability: A condition characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. Intellectual disability forms a subset within the larger universe of developmental disability, but the boundaries are often blurred as many individuals fall into both categories to differing degrees and for different reasons. Examples of intellectual disability include Down Syndrome and some forms of cerebral palsy.

Multiple disabilities: Refers to having more than one disability.

Person with disability: Under India’s Rights of Persons with Disabilities Act, 2016, a “person with disability” means “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.”[7] The new legislation contains a schedule identifying 21 “impairments” for the purpose of certification.[8]

Psychosocial disability: The preferred term to described persons with mental health conditions such as depression, bipolar disorder, schizophrenia and catatonia. This term expresses an interaction between psychological differences and social or cultural limits for behavior, as well as social stigma directed at persons with mental health conditions.[9]

Sexual violence: As used in this report, “sexual violence” includes both penetrative and non-penetrative sexual acts using violence.

Special educator: As used in this report, “special educator” refers to someone who facilitates communication with a person with a disability and provides support to them in the criminal justice process. The preferred term in the international disability community is “support person” so we have used both terms interchangeably in this report.

 

Acknowledgements

This report was researched and written by Nidhi Goyal and Shikha Silliman Bhattacharjee, consultants to the disability rights division at Human Rights Watch. It was edited by Shantha Rau Barriga, director in the disability rights division, and Meenakshi Ganguly, South Asia director. James Ross, legal and policy director, and Danielle Haas, senior Program editor, provided legal and program review, respectively. Specialist reviews were provided by the Women’s Rights Division and Bede Sheppard of the Children’s Rights Division. Production assistance was provided by Karolina Kozik, coordinator in the disability rights division; Rebecca Rom-Frank, publications and photography coordinator; Fitzroy Hepkins, administrative manager; and Jose Martinez, senior publications coordinator. 

We are particularly indebted to disability rights expert and advocate Amba Salelkar, who provided valuable input and feedback on the report.

We would also like to thank the many nongovernmental organizations, activists, and lawyers working in the fields of disability rights and sexual violence who shared their insights and analyses with us or otherwise provided assistance. In particular, Human Rights Watch would like to thank the following organizations for working with Human Rights Watch to identify cases: Anjali Mental Health Rights Organization; Equals Centre for Promotion of Social Justice; Graham Bell Centre for the Deaf; Human Rights Law Network; Latika Roy Foundation; National Platform for the Rights of the Disabled; Shanta Memorial Rehabilitation Centre; Shishusarothi; and Sruti Disability Rights Centre. Thank you also to Poonam Natrajan, former chairperson of The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities; Indumathi Rao, Community-Based Rehabilitation Network (South Asia); Bhargavi Davar, Bapu Trust for Research on Mind and Discourse; and Radhika Alkazi, Aarth Aastha, for their advice and guidance.

A special thank you to The Hans Foundation for supporting this research and hosting the April 2018 consultation in Delhi, India. This report would not have been possible without your partnership and commitment to the rights of persons with disabilities.

Above all, we would like to express our gratitude to the survivors of sexual violence and their family members who agreed to discuss their painful experiences with us.

Appendix I

Government of India, Ministry of Health and Family Welfare, Guidelines and Protocols, Medico-Legal Care for Victims/Survivors of Sexual Violence

The guidelines for medical examination of women and girls with disabilities are as follows:

Guidelines for examination:

Be aware of the nature and extent of disability that the person has and make necessary accommodations in the space where the examination is carried out.

Do not make assumptions about the survivor's disability and ask about it before providing any assistance.

Do not assume that a person with disability cannot give history of sexual violence himself/herself. Because abuse by near and dear ones is common, it is important to not let the history be dictated by the caretaker or person accompanying the survivor. History must be sought independently, directly from the survivor herself/himself. Let the person decide who can be present in the room while history is being sought and examination conducted.

Make arrangements for interpreters or special educators in case the person has a speech/hearing or cognitive disability. Maintain a resource list with names, addresses and other contact details of interpreters, translators and special educators in and around your hospital, who could be contacted for assistance.

Even while using the services of an interpreter, communicate with the person directly as much as possible, and be present while the interpreter or special educator is with the person.

Understand that an examination in the case of a disabled person may take longer. Do not rush through things as it may distress the survivor. Take time to make the survivor comfortable and establish trust, in order to conduct a thorough examination.

Recognize that the person may not have been through an internal examination before. The procedure should be explained in a language they can understand. They may have limited knowledge of reproductive health issues and not be able to describe what happened to them. They may not know how they feel about the incident or even identify that a crime was committed against them.

Ensure that adequate and appropriate counselling services are provided to the survivors. If required, the services of an expert may be required in this regard, which should be made available.

Consent: All persons are ordinarily able to give or refuse to give informed consent, including persons with mental illness and intellectual disabilities, and their informed consent should be sought and obtained before any medical examination. Some specific steps may be required when taking informed consent from persons with mental illness or those with intellectual disabilities. If it is deemed necessary, such persons should (a) be provided the necessary information (what the procedure involves, the reason for doing the procedure, the potential risks and discomforts) in a simple language and in a form that makes it easy for them to understand the information; (b) be given adequate time to arrive at a decision; (c) be provided the assistance of a friend/colleague/care-giver in making the informed consent decision and in conveying their decision to medical personnel. The decision of the person to either give consent or refuse consent with the above supports, to the medical examination, should be respected.

 

[1] Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, U.N. Doc. A/61/49 (2006), entered into force May 3, 2008. India ratified the CRPD in 2007. This approach emphasizes the person before the disability, focuses on the disabling barriers erected by society, and emphasizes the state responsibility to remove these barriers in order to achieve equality.

[2] Ibid.

[3] World Health Organization and World Bank, “World Report on Disability 2011,” http://www.who.int/disabilities/world_report/2011/report.pdf (accessed July 3, 2016); Punarbhava, “Census of India: 2011 Data on Disability,” http://punarbhava.in/index.php/disability-register/census-2011-disabilit... (accessed July 4, 2016).

[4] “Definition of Cerebral Palsy,” CerebralPalsy.org, http://www.cerebralpalsy.org/about-cerebral-palsy/definition (accessed November 7, 2016).

[5] Convention on the Rights of the Child (CRC), 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 Sept. 2, 1990, article 1. India ratified the CRC in 1992.

 

[6] The Rights of Persons with Disabilities Act, 2016, No. 49 of 2016.

[7] Ibid.

[8] Ibid, Schedule.

[9] Human Rights Watch, “Treated Worse than Animals”: Abuses against Women and Girls with Psychosocial or Intellectual Disabilities in Institutions in India, August 2014, https://www.hrw.org/sites/default/files/report_pdf/india1214.pdf (citing World Network of Users and Survivors of Psychiatry, “Manual on Implementation of the Convention on the Rights of Persons with Disabilities,” 2009, http://www.chrusp.org/home/resources (accessed November 23, 2016), p. 9).

[10] Human Rights Watch, “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, November 8, 2017, https://www.hrw.org/report/2017/11/08/everyone-blames-me/barriers-justic....

[11] These 111 interviews included interviews with five women who were raped; nine family members of six survivors; seven lawyers, including two lawyers practicing at the Supreme Court; one Public Prosecutor from Odisha; one judge from Odisha; two crisis center administrators in-charge and one handling administrator from three one-stop crisis centers in Odisha and Maharashtra; one superintendent of a mental hospital; two superintendents of two women’s shelter homes from Odisha; two Special Cell for Women and Children coordinators in Maharashtra; two special educators and one sign language interpreter with experience supporting testimony of women and girls with disabilities in rape cases; and 43 disability rights activists, including 14 women with disabilities who were survivors of violence or discrimination. We also interviewed seven police officials including one police commissioner, Crime branch from Odisha; an inspector general of police from Uttarakhand; the Deputy Police Commissioner for Women in West Bengal, two Inspectors General from the crime branches in Odisha and Maharashtra, and two police officers from Kolkata, West Bengal. Finally, we interviewed three central and 10 state government officials, including six protection officers in Karnataka; the Secretary of Health from the Department of Health and Family Welfare, West Bengal; a state commissioner for persons with disabilities, Odisha; the chairperson, one senior research officer, and one member of the National Commission for Women; one member the District Legal Services Authorities from Karnataka; and one Chairperson, Child Welfare Committee, Tamil Nadu. In many cases, we interviewed respondents more than once to update research as cases progressed.

[12] Office of the Registrar General & Census Commissioner, India, “Presentation on Disability, Census of India 2011: Data on Disability,” December 27, 2013, http://censusindia.gov.in/ (accessed January 6, 2017); B Sivakumar, “Disabled population up by 22.4% in 2001-11,” Times of India, December 29, 2013, http://timesofindia.indiatimes.com/india/Disabled-population-up-by-22-4-... (accessed July 3, 2016).

[13] World Health Organization and World Bank, “World Report on Disability 2011,” http://www.who.int/disabilities/world_report/2011/report.pdf; Punarbhava, “Census of India: 2011 Data on Disability,” http://punarbhava.in/index.php/disability-register/census-2011-disabilit....

[14] Sachin P. Mampatta, “India’s missing disabled population,” Livemint, September 16, 2015, http://www.livemint.com/Opinion/1rx8tSYGwHB0ZRsvdNFiBP/Indias-missing-di... (accessed July 3, 2016).

[15] WHO World Report on Disability, 2011, details the challenges associated with national census and survey-based approaches to measuring disability and provides detailed guidelines on how to improve census outcomes. “Censuses cover entire populations, occur at long intervals, and by their nature can incorporate only a few disability-relevant questions. While considerable socioeconomic data, such as employment rates and marital status, are available from censuses, they can provide only limited information about participation.” The report highlights the potential of surveys if used well: “Surveys have the possibility of providing richer information through more comprehensive questions including on institutionalized populations. [F]or example, survey questions identify people with disabilities for impairments in body function and structure, but also increasingly for activities, participation, and environmental factors. Some surveys also provide information on the origins of impairments, the degree of assistance provided, service accessibility, and unmet needs.” World Health Organization and World Bank, “World Report on Disability 2011,” http://www.who.int/disabilities/world_report/2011/report.pdf, p. 22.

[16] UN Human Rights Council, “Report of the Special Rapporteur on violence against women, its causes and consequences, Rashida Manjoo,” April 1, 2014, A/HRC/26/38/Add.1., http://www.ohchr.org/EN/HRBodies/HRC/RegularSessions/Session26/Documents... (March 13, 2018).

[17] Some states, however, have taken measures to maintain disaggregated data. The Maharashtra police, for instance, reported that between January and October 2015, 76 women and girls with disabilities (including those characterized as “mentally challenged” and “handicapped”) were victims of rape in Maharashtra alone. Maharashtra Police, Presentation on “Measures Taken to Prevent Crime Against Women,” on file with Human Rights Watch.

[18] “One of the biggest challenges for disabled women is access: Lalitha Kumaramangalam,” Livemint, http://www.livemint.com/Politics/0WeOfoTABR6efNnuNF8nPJ/One-of-the-bigge... (accessed December 16, 2017).

[19] S. Mohapatra and M. Mohanty, “Abuse and Activity Limitation: A Study on Domestic Violence Against Disabled Women in Odisha,” 2004, http://swabhiman.org/userfiles/file/Abuse%20and%20Activity%20Limitation%... (accessed July 3, 2016).

[20] CREA, “Count Me In! Violence Against Disabled, Lesbian, and Sex-working Women in Bangladesh, India, and Nepal,” 2011, http://www.creaworld.org/sites/default/files/The%20Count%20Me%20In%21%20... (accessed July 3, 2016). Figures on the prevalence of violence against women with disabilities reflect qualitative and quantitative surveys conducted with women with disabilities. Researchers contacted 432 women with disabilities, and 317 participated in the study. Of the 317 respondents, 243 lived in Mumbai, 72 in adjacent Thane, and two in Navi Mumbai.

[21] In 2013, India’s Penal Code was amended, with the aim of improving access to justice. For a detailed discussion of these provisions, please see Human Rights Watch, “Everyone Blames Me,”Section VI: National and International Legal Framework: https://www.hrw.org/report/2017/11/08/everyone-blames-me/barriers-justic....

[22] Rights of Persons with Disabilities Act, 2016, no. 49 of 2016.

[23] Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, U.N. Doc. A/61/49 (2006), entered into force May 3, 2008.

[24] These provisions resulted from sustained advocacy from Indian and international activists and organizations working on disability rights. Following the December 2012 gang rape perpetrated against Jyoti Pandey in Delhi, which resulted in fatal injuries, the national government formed a three-member commission headed by former Indian Supreme Court Chief Justice Jagdish Sharan Verma. Indian and international activists and organizations working on disability rights submitted information to the committee on the need to address sexual violence against women and girls with disabilities. These submissions reflected protections for women and girls with disabilities set forth in the CRPD, CEDAW, and POCSO. “Delhi gang rape case: Parliament session decision after Verma Committee report, says P Chidambaram,” The Economic Times, December 31, 2012, http://articles.economictimes.indiatimes.com/2012-12-31/news/36079350_1_... (accessed July 4, 2016); Justice J.S. Verma, “Report of the Committee on Amendments to Criminal Law,” January 3, 2013, http://www.prsindia.org/uploads/media/Justice%20verma%20committee/js%20v... , (accessed on August 14, 2017), para. 5, p. 22, (noting that the committee took an analysis of a wide range of recommendations, including from specialists on disability rights). Among these submissions, on January 5, 2013, Human Rights Watch submitted a letter to Justice Verma that called for targeted measures to meet the needs of women with disabilities and other marginalized groups. Letter from Human Rights Watch, “India: HRW Letter to Justice Verma, Chair of the Commission on reforms on sexual assault and Former Chief Justice of the Supreme Court of India,” January 5, 2015, https://www.hrw.org/news/2013/01/05/india-hrw-letter-justice-verma-chair.... Shampa Sengupta, “Little has changed for modern day Subhasini,” The Statesman, December 2, 2013, https://www.thestatesman.com/opinion/little-has-changed-for-modern-day-s... (accessed March 11, 2018).

[25] Amendment to the Code of Criminal Procedure, 1973 by the Criminal Law Amendment Act, 2009, No. 5 of 2009, (inserting Proviso to (a) 154(1) CrPC)).

[26] Amendment to the Code of Criminal Procedure, 1973 by The Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting proviso (5A)(a) to Section 164(5) CrPC).

[27] Ibid.

[28] A statement recorded of a person who is temporarily or permanently mentally or physically disabled shall be considered a statement in lieu of examination-in-chief (direct examination). The person giving the statement can be cross-examined on their statement without the need for repeating their statement during the trial. See section 137 of the Indian Evidence Act (Amendment to the Code of Criminal Procedure, 1973 by The Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting section 164(5A)(b) CrPC).

[29] Amendment to the Code of Criminal Procedure, 1973 by The Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting proviso to 54A CrPC). For instance, the Supreme Court of India has held that a voice sample can be used in identification by means of a voice identification parade under section 54A of the Code or by some other person familiar with the voice of the accused. (Ritesh Sinha v. Uttar Pradesh, Supreme Court of India, JT 2012 (12) SC 258, December 7, 2012).

[30] Amendment to the Code of Criminal Procedure, 1973 by The Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting proviso (a) to Section 154(1) CrPC.

[31] Women Enabled, “A year after the Delhi gang rape, what has changed for women and girls with disabilities?” December 16, 2013, http://www.womenenabled.org/newsarchive.html (accessed July 3, 2016).

[32] See Human Rights Watch, “Everyone Blames Me, https://www.hrw.org/report/2017/11/08/everyone-blames-me/barriers-justic....

[33] Protection of Children from Sexual Offences Act, 2012, No. 32 of 2012, section 26(3)).

[34] Ibid., section 26(3)) and section 38(2).

[35] Amendment to the Code of Criminal Procedure, 1973 by The Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting proviso (c) to Section 154 (3) CrPC); Protection of Children from Sexual Offences Rules, 2012, G.S.R 823(E), Rule 4(2)(a) (noting that FIRs should be recorded and registered under the provisions of Section 154 of the Code of Criminal Procedure, 1973).

[36] Rights of Persons with Disabilities Act, 2016, no. 49 of 2016, Schedule, p. 33-35.

[37] Rights of Persons with Disabilities Act, 2016, no. 49 of 2016, Section 7.

[38] CRPD.

[39] Ibid.

[40] Ibid., art. 15.

[41] CRPD.

[42] UN Committee on the Rights of Persons with Disabilities, General Comment no. 3, Art. 6: Women and girls with disabilities, U.N. Doc CRPD/C/GC/3 (2016), para. 52.

[43] UN Declaration on the Elimination of Violence against Women, adopted on December 20, 1993, UN Doc A/RES/48/104, http://www.un.org/documents/ga/res/48/a48r104.htm (accessed March 1, 2017).

[44] UN Committee on the Elimination of Discrimination against Women (CEDAW), General Recommendation no. 18 adopted at the Tenth Session, 1991 (contained in Document A/46/38), 1991, A/46/38, http://www.refworld.org/docid/453882a322.html (accessed 4 November 2016); CEDAW, General Recommendations nos. 19 and 20, adopted at the Eleventh Session, 1992 (contained in Document A/47/38). 1992, A/47/38, http://www.refworld.org/docid/453882a422.html (accessed 4 November 2016).

[45] CEDAW, “Concluding observations on the combined fourth and fifth periodic reports of India,” July 18, 2014, CEDAW/C/INC/CO/4-5 http://cedawsouthasia.org/wp-content/uploads/2010/12/CEDAW_C_IND_CO_4-5_... (accessed March 2, 2017).

[46] Convention on the Rights of the Child (CRC), 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 Sept. 2, 1990, art. 34.

[47] Ibid., art. 39. The principle of non-discrimination is articulated in art. 2 of the CRC, which expressly prohibits discrimination on the grounds of disability: “States parties shall respect and ensure the rights set forth in the present Convention to each child ...without discrimination of any kind, irrespective of the child’s...disability...or other status.”

[48] Committee on the Rights of the Child, “Concluding observations on the consolidated third and fourth periodic reports of India,” June 13, 2014, CRC/C/IND/CO/3-4, http://www.indianet.nl/pdf/CRC_CO_India_140613.pdf (accessed October 7, 2017).

[49] Committee on Economic, Social and Cultural Rights, “The right to the highest attainable standard of health,” General Comment 14, Twenty-second Session, 2000, Compilation of General Comments and General Recommendations Adopted by Human Rights Treaty Bodies, UN Doc. HRI\GEN\1\Rev.1 (1994), para. 35, http://www.refworld.org/pdfid/4538838d0.pdf (accessed on October 7, 2017).

[50] Ibid.

[51] Universal Declaration of Human Rights, adopted December 10, 1948, G.A. Res. 217A (III), U.N. Doc. A/810 at 71 (1948), art. 5; International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1996, G.A. Res. 2200A (XX1), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force March 23, 1976, ratified by India on April 10, 1979, art. 7.

[52] UN Human Rights Committee, General Comment No. 20, Replaces General Comment No. 7 concerning prohibition of torture and cruel treatment or punishment (Forty-fourth session, 1992), Compilation of General Comments and General Recommendations Adopted by Human Rights Treaty Bodies, UN Doc. HRI\GEN\1\Rev.1 (1994), paras. 2 and 5.

[53] For an overall account of the challenges faced by women and girls who face sexual violence in India, see Human Rights Watch, “Everyone Blames Me,” November 8, 2017, https://www.hrw.org/report/2017/11/08/everyone-blames-me/barriers-justic....

[54] Kalpana Sharma, “The Other Half- Different and Able,” The Hindu, July 11, 2011, http://www.thehindu.com/opinion/columns/Kalpana_Sharma/the-other-half-di... (accessed July 3, 2016).

[55] Human Rights Watch interview with Shreya Rani Dei, Bhubaneshwar, Odisha, September 20, 2016.

[56] Memorandum submitted to the National Commission for Women on September 18, 2015 by the National Platform for the Rights of the Disabled, http://www.kractivist.org/press-release-sexual-assaults-on-disabled-wome... (accessed March 11, 2018); Human Rights Watch telephone interview with Shampa Sengupta, director, Shruti Disability Rights Centre, August 18, 2016.

[57] Human Rights Watch interview with Shabana, Herbertpur, Uttarakhand, August 4, 2017.

[58] Social perceptions, including among families and caregivers, that women with disabilities are child-like may also increase risk of abuse. For instance, while sharing rooms among female and male relatives is considered socially unacceptable after puberty, disability rights activist Anita Gai reports that women with disabilities are routinely made to share rooms with male relatives long after it is appropriate to do so, increasing risk of sexual abuse. Ashwaq Masoodi, “Sexual rights of disabled women,” Livemint, December 3, 2014, http://www.livemint.com/Politics/FDPpol4lJ0pX037spUU1kL/Sexual-rights-of... (accessed July 3, 2016).

[59] Human Rights Watch interview with Meenu Mani, activist with the National Platform for the Rights of the Disabled, Delhi, August 10, 2016; Human Rights Watch group interview with four staff members at Anjali Mental Health Rights Organization, Kolkata, West Bengal, August 4, 2016.

[60] Human Rights Watch interview with Meenu Mani, activist with the National Platform for the Rights of the Disabled, Delhi, August 10, 2016.

[61] Human Rights Watch interview with Reena Mohanty, activist with Shantha Memorial Rehabilitation Centre, Bhubaneshwar, Odisha, September 20, 2016.

[62] Human Rights Watch telephone interview with C. Murukeshan, July 8, 2016.

[63] Human Rights Watch group interview with four staff members at Anjali Mental Health Rights Organization, Kolkata, West Bengal, August 4, 2016.

[64] These reports are consistent with a 2011 study by CREA. Some respondents said that when they tried to speak to their families about abuse they endured as children, they were made to feel that it was their fault. These experiences, women reported, taught them from an early age that they should not report or attempt to put a stop to abuse. CREA, “Count Me In! Violence Against Disabled, Lesbian, and Sex-working Women in Bangladesh, India, and Nepal,” http://www.creaworld.org/sites/default/files/The%20Count%20Me%20In%21%20....

[65] Human Rights Watch telephone interview with C. Murukeshan, July 8, 2016.

[66] Human Rights Watch interview with L. Vincent Sundaraj, Krishnagiri District, Tamil Nadu, October 7, 2016.

[67] Human Rights Watch interview with Meenu Mani, activist with the National Platform for the Rights of the Disabled, Delhi, August 10, 2016; Human Rights Watch interview with Reena Mohanty, activist with Shantha Memorial Rehabilitation Centre, Bhubaneshwar, Odisha, September 20, 2016; Human Rights Watch telephone interview with C. Murukeshan, July 8, 2016; Human Rights Watch group interview with 4 staff members at Anjali Mental Health Rights Organization, Kolkata, West Bengal, August 4, 2016.

[68] Human Rights Watch interview with Nafisa, Shanta Memorial Rehabilitation Centre (SMRC), Bhubaneshwar, Odisha, September 20, 2016.

[69] Human Rights Watch interview with Mansoor Ali, director of Graham Bell Centre for the Deaf, Hooghly District, West Bengal, August 5, 2016.

[70] Government of India, Ministry of Health and Family Welfare, Guidelines and Protocols, Medico-Legal Care for Victims/Survivors of Sexual Violence, http://uphealth.up.nic.in/med-order-14-15/med2/sexual-vil.pdf (accessed March 11, 2018).

[71] The concept of reasonable accommodation was first applied to the disability context in the United States Rehabilitation Act, 1973. In codifying the concept of reasonable accommodation, states have used a variety of terms including “reasonable accommodation, reasonable adjustments, adaptations or measures, and effective or suitable modifications.” UN General Assembly, Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, “The Concept of Reasonable Accommodation in Selected National Disability Legislation, Background conference document prepared by the Department of Economic and Social Affairs,” Seventh session, New York, January 16-February 3, 2006, A/AC.265/2006/CPR.1, http://www.un.org/esa/socdev/enable/rights/ahc7bkgrndra.htm (accessed August 9, 2017).

[72] Ibid.

[73] Under the CRPD, “‘reasonable accommodation’ means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.” CRPD, art. 2.

[74] Human Rights Watch interview with Mamta Govil, Dehradun, Uttarakhand, August 20, 2017.

[75] Human Rights Watch interview with Mehtab Zia Shaikh, vice principal of the Bombay Institute for Deaf and Mute, Mumbai, June 22, 2017.

[76] Judgment on file with Human Rights Watch.

[77] Human Rights Watch group interview with Sudeshna Basu and three other staff members at Anjali Mental Health Rights Organization, Kolkata, West Bengal, August 4, 2016.

[78] Human Rights Watch interview with Poonam Natarajan, former chairperson of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities for India’s Ministry of Social Justice and Empowerment and founder of Vidyasagar, Delhi, November 15, 2016.

[79] Human Rights Watch telephone interview with Meenakshi Balasubramanium, April 15, 2017.

[80] Under the Criminal Law Amendment Act, 2013, FIRs of stipulated crimes against women, including under sections 326, 354, 376, and 509 are to be recorded by a woman police officer. See Amendment to the Code of Criminal Procedure, 1973 by Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting Proviso to Section 154 (1) CrPC). Consistent with this prescription, the Delhi High Court has held that every police station should have a woman police officer, not below the rank of head constable, available around-the-clock. As soon as a complaint of sexual offense is received, the officer receiving the complaint should be instructed to call a woman police officer to ensure that the victim of sexual abuse and their family are comfortable. See Delhi Commission for Women v. Delhi Police, Delhi High Court, W.P. (CRL) 696/2008, April 23, 2009.

[81] 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, 41 (explaining that police officers face pressure from political leaders to show a reduction in crime by registering fewer FIRs. Police also attribute refusal to register FIRs to reluctance to take on new cases that add to an already heavy workload); Human Rights Watch, Cleaning Human Waste: Manual Scavenging, Caste and Discrimination in India, August 2014, https://www.hrw.org/report/2014/08/25/cleaning-human-waste/manual-scaven..., p. 47.

[82] Human Rights Watch interview with Niranjan Behera, State President of Odisha Viklang Manch, Bhubaneshwar, Odisha, January 27, 2016. Charges in this case, if accepted, would likely involve the Information Technology Act, 2000, provision 66E on violation of privacy by “capture” of images; IPC section 375 on rape and 503 on criminal intimidation.

[83] Human Rights Watch interview with Susmita, Kolkata, West Bengal, January 20, 2016.

[84] Ibid.

[85] Human Rights Watch telephone interview with Namburajan, treasurer, National Platform for the Rights of the Disabled (NPRD), July 7, 2016.

[86] Human Rights Watch interview with Anjali, New Delhi, August 12, 2016.

[87] Human Rights Watch interview with Station House Officer, Dehradun Kotwali Police Station, October 13, 2016.

[88] Protection of Children from Sexual Offences Act, 2012, No. 32 of 2012, section 24(1); Amendment to the Code of Criminal Procedure, 1973 by Criminal Law Amendment Act, 2009, No. 5 of 2009, (inserting Proviso to 157(1) CrPC).

[89] Protection of Children from Sexual Offences Act, 2012, No. 32 of 2012, section 24(4).

[90] Human Rights Watch interview with Ashim, Hooghly District, West Bengal, August 5, 2016.

[91] Memorandum submitted to the National Commission for Women on September 18, 2015 by the National Platform for the Rights of the Disabled, http://www.kractivist.org/press-release-sexual-assaults-on-disabled-wome... Human Rights Watch telephone interview with Shampa Sengupta, director, Shruti Disability Rights Centre, August 18, 2016.

[92] Ibid.

[93] For further information on difficulties accessing disability certificates, see Shiv Sahay Singh, “Only 40 percent of India’s disabled have access to disability certificates,” The Hindu, December 3, 2014, http://www.thehindu.com/news/cities/kolkata/only-40-per-cent-of-indias-d... (accessed March 11, 2018); and “A Just Step Forward: The disabilities bill is welcome, but falls short on some key issues,” Economic and Political Weekly, vol. 51, issue No. 51, December 17, 2016, http://www.epw.in/journal/2016/51/editorials/just-step-forward.html?0=ip... (accessed January 9, 2016).

[94] Human Rights Watch interview with advocate, Priya (pseudonym, name withheld to preserve confidentiality), Maneka’s advocate, New Delhi, August 9, 2016.

[95] Human Rights Watch interview with Kanika, New Delhi, August 9, 2016.

[96] Human Rights Watch interview with Priya, Maneka’s advocate, New Delhi, August 9, 2016.

[97] Human Rights Watch interview with Kanika, New Delhi, August 9, 2016.

[98] Code of Criminal Procedure, 1973, no. 2 of 1974, art. 154(2).

[99] Human Rights Watch interview with Muralidharan, secretary, National Platform for the Rights of the Disabled (NPRD), Delhi, June 23, 2016.

[100] Memorandum submitted to the National Commission for Women on September 18, 2015, by the National Platform for the Rights of the Disabled, http://www.kractivist.org/press-release-sexual-assaults-on-disabled-wome... workers (accessed March 11, 2018).

[101] Human Rights Watch interview with Debashree Sabuj, deputy commissioner for women in Kolkata, February 5, 2016.

[102] Human Rights Watch interview with Sanjay Gunjyal, inspector general of police, Dehradun, Uttarakhand, August 5, 2017.

[103] Human Rights Watch interview with Rizwan Ali Fahim, lawyer, Latika Roy Foundation, Dehradun, Uttarakhand, August 5, 2017.

[104] Delhi Domestic Working Women’s Forum v. Union of India and Others, Supreme Court of India, 1995 SCC (1) 14, October 19, 1995.

[105] Ibid.

[106] Protection of Children from Sexual Offences Rules, 2012, G.S.R 823(E), Rule 4.

[107] Human Rights Watch telephone interview with Shampa Sengupta, director, Shruti Disability Rights Centre, August 18, 2016.

[108] Human Rights Watch interview with Poonam Natarajan, former chairperson of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities for India’s Ministry of Social Justice and Empowerment and founder of Vidyasagar, Delhi, November 15, 2016.

[109] Human Rights Watch, Dignity on Trial: India's Need for Sound Standards for Conducting and Interpreting Forensic Examinations of Rape Survivors , September 2010, https://www.hrw.org/sites/default/files/reports/india0910webwcover.pdf, p. 13.

[110] Amendment to the Code of Criminal Procedure, 1973 by Criminal Law Amendment Act, 2013, No. 13 of 23 (inserting section 357C CrPC). A survivor of rape has the right to approach medical services before legally registering a complaint in a police station. A doctor or hospital is now required to examine a victim of rape if she reports to the hospital directly, and voluntarily, without a police requisition. See State of Karnataka v. Manjanna, Supreme Court of India, 2000 (6) SCC 188, May 4, 2000. In cases where children are victims of sexual abuse, no medical practitioner, hospital or other medical facility center can demand any documentation as a prerequisite to providing emergency care. Required treatment is covered in rule 5(4) of the Protection of Children from Sexual Offences (POCSO) Rules, 2012, G.S.R 823(E), Rule 5(3)-5(5).

[111] Amendment to the Indian Penal Code, 1860 by Criminal Law Amendment Act, 2013, No. 13 of 23 (revising the First Schedule of the CrPC under the heading “1—OFFENCES UNDER THE INDIAN PENAL CODE”—inserting an entry in relationship to 166B of the IPC). Whoever is in charge of a hospital, public or private, whether run by the central or state government or otherwise, will be punished with imprisonment, fine or both for failing to treat a victim of acid attack or rape.

 [112] Under the 2012 Protection of Children from Sexual Offences Rules, police are required to arrange for emergency medical care if needed by the child, to take the child to the hospital and to ensure forensic samples are sent to the forensic laboratory at the earliest. See Protection of Children from Sexual Offences Rules, 2012, G.S.R 823(E), rule 4. India’s higher courts have held that police are legally mandated to ensure that victims of sexual violence have access to immediate medical attention. See Delhi Domestic Working Women’s Forum v. Union of India and Others, Supreme Court of India, 1995 SCC (1) 14, October 19, 1995.

[113] Human Rights Watch interview with Kanika, National Platform for the Rights of the Disabled (NPRD), New Delhi, August 9, 2016.

[114] Protection of Children from Sexual Offences Act, 2012, no. 32 of 2012, section 2.

[115] Guidelines and Protocols, Medico-Legal Care for Survivors/Victims of Sexual Violence, Ministry of Health and Family Welfare, Government of India, March 19, 2014, http://www.mohfw.nic.in/showfile.php?lid=2737. Specifically, the guidelines call on medical professionals to “ensure gender sensitivity in the entire procedure by disallowing any mention of past sexual practices through comments on size of vaginal introitus, elasticity of vagina or anus.” Further, it bars comments about built, height and weight, nutrition or gait that perpetuate stereotypes about whether someone was really a victim by commenting on their strength or ability to fight back. The guidelines also state that per vaginum or the “two-finger test” should not be done unless required for detection of injuries or for medical treatment.

[116] Government of India, Ministry of Health and Family Welfare, Guidelines and Protocols, Medico-Legal Care for Victims/Survivors of Sexual Violence, http://uphealth.up.nic.in/med-order-14-15/med2/sexual-vil.pdf. (See Appendix I).

[119] Jayshree Bajoria, “Doctors in India Continue to Traumatise Rape Survivors with the Two-Finger Test,” Scroll.in, November 9, 2017, https://scroll.in/article/857169/doctors-in-india-continue-to-traumatise....

[120] Human Rights Watch interview with Diya, Hooghly District, West Bengal, August 5, 2016.

[121] UN Committee on the Rights of Persons with Disabilities, General Comment No. 3, para. 52, stating: “Women with disabilities face barriers to accessing justice including with regard to exploitation, violence and abuse, due to harmful stereotypes, discrimination and lack of procedural and reasonable accommodations, which can lead to their credibility being doubted and their accusations being dismissed. Procedures or enforcement attitudes may intimidate victims or discourage them from pursuing justice. These can include: complicated or degrading reporting procedures; referral of victims to social services rather than legal remedies; dismissive attitudes by police or other enforcement agencies. This can lead to impunity and invisibility of the issue, resulting in violence lasting for extended periods of time. Women with disabilities may also fear reporting violence, exploitation or abuse because they are concerned they may lose their support requirements from caregivers.”

[122] Saptarshi Mandal, “The Burden of Intelligibility: Disabled Women’s Testimony in Rape Trials,” Indian Journal of Gender Studies, 2013, vol. 20, no. 1, pp. 1–29. This study includes an analysis of 21 judicial decisions from India’s appellate courts, including the High Courts and the Supreme Court. Mandal directs attention to limitations in sections 118 and 119 of the Indian Evidence Act, 1872. Notably, section 119 of the Evidence Act mentioned by Mandal in this analysis was revised under the 2013 criminal law amendments.

[123] Human Rights Watch interview with Anjali, New Delhi, August 12, 2016.

[124] Ibid. Instead of requiring Meera to testify once again, Anjali called for a stay in proceedings. She then appealed to the Supreme Court to transfer the case to a Special Court designated under POCSO on the grounds that Meera’s biological age at the time of the incident was 38 years old, but that her mental age is 6 due to the impact of cerebral palsy on her intellectual development. This line of legal reasoning met with sharp disapproval from disability rights activists who argued that granting an adult woman relief under a law designated for children based on her disability reinforces the stigma that women with disabilities should be infantilized. On July 21, 2017, the Supreme Court of India ruled that relief under POCSO must be determined by the victim’s biological rather than mental age. Written submissions on behalf of the petitioner are on file with Human Rights Watch.

[125] Human Rights Watch interview with Karuna, Shanta Memorial Rehabilitation Centre (SMRC), Bhubaneshwar, Odisha, September 19, 2016.

[126] Human Rights Watch telephone interview with Santoshi Kansari, social worker, July 7, 2016. Two years later, at the time of publication in March 2018, the sisters had been relocated to another area. They had decided not to press charges. Human Rights Watch telephone interview with Santoshi Kansari, social worker, March 9, 2018.

[127] Human Rights Watch interview with Ashim, Hooghly District, West Bengal, August 5, 2016.

[128] Code of Criminal Procedure, section 357A.

[129] Protection of Children from Sexual Offences Rules, 2012, rule 7(1)-(6).

[130] “Government Issues Guidelines for Administration and Operationalization of ‘Nirbhaya Fund,’” Press Information Bureau, Government of India, April 1, 2015, http://pib.nic.in/newsite/PrintRelease.aspx?relid=117914 (accessed February 18, 2017).

[131] Human Rights Watch telephone interview with Meenakshi Balasubramanium, April 15, 2017.

[132] Human Rights Watch interview with Anjali, New Delhi, August 12, 2016.

[133] UN Committee on the Rights of Persons with Disabilities, General Comment no. 3, para. 59, stating:

“Women represent a disproportionate percentage of the world's poor as a consequence of discrimination, leading to a lack of choice and opportunities, especially formal employment income. Poverty is both a compounding factor and the result of multiple discrimination. Older women with disabilities, especially, face many difficulties in accessing adequate housing, they are more likely to be institutionalized and do not have equal access to social protection and poverty reduction programs.”

[134] Human Rights Watch interview with Rizwan Ali Fahim, lawyer, Latika Roy Foundation, Dehradun, Uttarakhand, August 5, 2017. At the time of publication, in March 2018, the family had not yet received compensation.

[136] Human Rights Watch interview with Rekha, Karnataka protection officer, November 30, 2016.

[137] Ministry of Women and Child Development, One-Stop Centre Scheme, http://www.wcd.nic.in/sites/default/files/ProposalforOneStopCentre17.3.2... (accessed January 28, 2018).

[138] The Convention on the Rights of Persons with Disabilities provides the following definition of universal design: “‘Universal design’ means the design of products, environments, programmed and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. ‘Universal design’ shall not exclude assistive devices for particular groups of persons with disabilities where this is needed.” CRPD, art. 2.

Posted: January 1, 1970, 12:00 am

Women and girls with disabilities in India who survive sexual violence face high barriers to access the justice system.

(New Delhi) – Women and girls with disabilities in India who survive sexual violence face high barriers to access the justice system, Human Rights Watch said in a new report today. Five years ago, the government adopted significant legal reforms for sexual violence cases, but serious gaps remain in implementation. 

“Since 2013, India has made important legal reforms on sexual violence, but women and girls with disabilities still lack equal access to justice,” said Nidhi Goyal, a disability rights activist and co-author of the report. “Indian women and girls with disabilities should no longer remain the invisible victims of sexual violence.”

The 61-page report, “Invisible Victims of Sexual Violence: Access to Justice for Women and Girls with Disabilities in India,” details the challenges many women and girls with disabilities face throughout the justice process: reporting abuse to the police, obtaining appropriate medical care, having complaints investigated, navigating the court system, and getting adequate compensation.

A sign of a government-run one-stop crisis center in Bhubaneswar, Odisha. The one-stop crisis centers are places where integrated services—police assistance, legal aid, medical and counseling services—are available to victims of violence. These centers can play a key role in ensuring care and justice.

© 2016 Shantha Rau Barriga/Human Rights Watch
After the fatal gang rape of Jyoti Singh Pandey in Delhi in December 2012, the Indian government strengthened laws on sexual violence. The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) includes several provisions to safeguard the rights of women and girls with disabilities and facilitate their participation in investigative and judicial processes.

Human Rights Watch investigated 17 cases of rape and gang rape from eight states in India (Chhattisgarh, Delhi, Karnataka, Maharashtra, Odisha, Tamil Nadu, Uttarakhand, and West Bengal). These include eight girls and nine women living with a spectrum of disabilities, including physical, sensory, intellectual, and psychosocial disability. Altogether 111 people were interviewed, including sexual violence survivors, family members, lawyers, officials from mental health institutions and shelter facilities, police, government officials, disability rights activists, and “special educators.”

In a November 2017 report on barriers to justice and support services for sexual assault survivors in India, Human Rights Watch found that women and girls who survive rape and other sexual violence often suffer humiliation at police stations and hospitals. Police are frequently unwilling to register their complaints, victims and witnesses receive little protection, and medical professionals still conduct degrading “two-finger” tests. These obstacles to justice and dignity are compounded by inadequate health care, counselling, and legal support for victims during criminal trials.

For Indian women and girls with disabilities, who face a higher risk of sexual violence, the challenges are even greater. Women with physical disabilities may find it more difficult to escape from violent situations. Those who are deaf may not be able to call for help or easily communicate abuse. Women and girls with intellectual or psychosocial disabilities may not know that non-consensual sexual acts are a crime and should be reported. Stigma related to their sexuality and disability compounds these challenges.

“Kanchana,” a 19-year-old woman with an intellectual disability from a village in West Bengal, was raped several times in 2013 by a local man. Kanchana was not aware that she should report being raped, which was only discovered when she was five-months’ pregnant. And her intellectual disability made it difficult to explain to the police what had happened.

Human Rights Watch found that few police officers have the training or expert support needed to handle these cases. In some cases, police excluded women and girls with disabilities from specific assistance guaranteed by the 2013 amendments because of survivors’ inability to certify a disability. In other cases, police failed to include needed details in their First Information Report (FIR). Police also rarely provided information on the right to free legal aid or legal aid services to survivors or their families.

India’s criminal justice system has largely failed to implement the 2013 amendments, such as providing police and judicial trainings to create an enabling, supportive environment for survivors with disabilities. Some states have adopted good practices, but they are exceptions, not the norm.

To improve interaction with the police and the judicial process, women and girls with disabilities may need procedural and age-appropriate accommodations, and other support depending on their disabilities. This could include access to sign-language interpretation, the presence of someone to facilitate communication (a “special educator”), use of simple language, and the option to file reports in braille.

In India, if you experience sexual abuse (bad touch) or rape, the police, hospital, and courts are supposed to help you.

“Razia,” a 13-year-old girl with an intellectual disability and difficulties speaking, found it challenging to recount her rape by her brother’s 17-year-old tutor. A social worker from the Latika Roy Foundation introduced creative techniques, such as using a doll, that helped Razia give a clear and consistent account of the abuse she experienced.

Karuna, a woman with low vision, did not tell her family after she was raped by a blind man. She explained, “He threatened me not to tell anyone. I was scared so I didn’t tell anyone what had happened” (Odisha).

© 2016 Shantha Rau Barriga/Human Rights Watch
Indian law and policies require state governments to facilitate compensation, including in cases where the offender cannot be traced or identified. However, Human Rights Watch found that even in cases of extreme violence, trauma, and economic hardship – including due to childbirth following rape – women and girls with disabilities had difficulties in securing compensation. Compensation is particularly important for women and girls with disabilities and their families from rural areas or marginalized communities.

India’s leadership has repeatedly expressed concern over sexual violence and has said it is committed to reforms. In 2007, India ratified the Convention on the Rights of Persons with Disabilities. In December 2016, the Parliament adopted the Rights of Persons with Disabilities Act, which aims to protect all persons with disabilities from abuse, violence, and exploitation, and articulates specific measures to be taken by appropriate government officials, executive magistrates and the police.

“India has taken important steps to reform the criminal justice system to include women and girls with disabilities, but our new research shows the need for action and implementation,” Goyal said. “The government should act promptly to ensure accommodations and other measures so that women and girls with disabilities are out of the shadows of justice.”

Key provisions of the Criminal Law Amendments, 2013 aimed at enabling the participation of women and girls with disabilities in the criminal justice process include:

  • The right to record their statement with police in the safety of their home or a place of their choice;
  • The right to have their police statements videotaped;
  • The right to assistance by a “special educator” or interpreter when the complaint is recorded and during trial; and
  • Exemption from having to repeat their videotaped statement at trial, subject to cross-examination.

Quotes from Rape Survivors and Their Families

“The police asked me very nasty things like how it felt for me. I told them I was totally unconscious, so how would I know? The police said things like, ‘She’s mental, why should I pay attention to her?’”
– “Susmita,” 26, a woman with a psychosocial disability from Kolkata, West Bengal, who reported being sedated and raped by four male neighbors in February 2014

“One day, my teacher was finishing some work on the sewing machine in the veranda and asked me to wait inside the house. I was alone inside and that was when her brother forced himself on me. I did not know that if someone raped me, I could go to the police.”
– “Nafisa,” 19, a woman with difficulties hearing and speaking, Bhubaneshwar, Odisha, who reported rape in September 2016

“We told the police she has a mental disability and she is physically handicapped… You can see her disability but it was still not recorded in the FIR.”
– “Kanika,” sister of “Maneka”, a 15-year-old girl with intellectual and physical disabilities, who reported being raped by two men from her Delhi neighborhood in October 2015

Quotes From Partners

“Due to high illiteracy levels, most women with disabilities have no source of income and are dependent on their families. This makes them easy targets for violence, often by the very people whom they rely on most. In this context, it’s clear why few women with disabilities report sexual violence.”
– Asha Hans, vice president of Shanta Memorial Rehabilitation Centre

“For a constituency that is more at risk of sexual abuse than their peers, women with disabilities are seriously disadvantaged by the criminal justice system. A lot of the focus of advocacy has been more stringent punishments, but none of that makes any sense if women with disabilities cannot participate in proceedings and ensure convictions of perpetrators.”
– Amba Salekar, director of programs at Equals – Centre for Promotion of Social Justice

 

Posted: January 1, 1970, 12:00 am

This is a guide for people with disabilities. In India, if you experience sexual abuse (bad touch) or rape, the police, hospital, and courts are supposed to help you. These are your rights. It is wrong for someone to touch you when you don’t want them to. It is wrong for someone to touch your private parts or make you touch theirs if you don’t want to. It is wrong for someone to kiss you when you don’t want to. If this happens, tell someone you trust. The person can be stopped from touching or hurting you again, and they can be punished. At the police station: You can file a report at a police station or another location that feels safe to you. Take someone you trust with you to the police. You can have a sign language interpreter or special educator, someone trained to help you tell your story. You can have your story recorded on video. You can pick out the person who hurt you in a way that you are able to, like by hearing their voice if you are blind or have low vision. At the hospital: If someone has hurt you or touched your private parts when you didn’t want them to, you can get free medical care right away. At the hospital, the doctor must ask you if it is okay to examine you and touch you. You can say no. You can ask for a female doctor. If she’s not available, you can have a female health worker and a person you trust in the room. You can ask for information in a way that you can understand. If you need more help, you can ask for a special educator. In court: You can tell a judge about what happened to you in a courtroom without the public or the media present. You can tell the judge if you need help from someone like a sign language interpreter or a special educator. Your lawyer should ask the court to give you compensation. You can get compensation even if the person who hurt you is not caught. If someone does bad things to you, you can get help.

Posted: January 1, 1970, 12:00 am

Women and girls with disabilities in India who survive sexual violence face high barriers to access the justice system, Human Rights Watch said in a new report today. Five years ago, the government adopted significant legal reforms for sexual violence cases, but serious gaps remain in implementation. “Since 2013, India has made important legal reforms on sexual violence, but women and girls with disabilities still lack equal access to justice,” said Nidhi Goyal, a disability rights activist and co-author of the report. “Indian women and girls with disabilities should no longer remain the invisible victims of sexual violence.”

Posted: January 1, 1970, 12:00 am

School-age children in Lebanon.

Top photos, bottom left photo: © 2017 Amanda Bailly for Human Rights Watch. Bottom center and right photos: © 2017 Sam Koplewicz for Human Rights Watch

Basmah, a 9-year-old girl from Akkar, starts her day like most Lebanese children, putting on a backpack as her siblings get ready for school. But Basmah isn’t going to school. She has Down Syndrome, and like thousands of children with disabilities in Lebanon, she isn’t getting an education.

Lebanon passed a law in 2000 that guaranteed the right to education for children with disabilities and barred schools from discriminating against them. But Basmah’s parents told us that their local public school denied her admission three years ago. The principal said Basmah “moved a lot” and couldn’t be in class with other children. She has never been to school.

The educational path of children with disabilities in Lebanon is strewn with logistical, social, and economic pitfalls that mean they often face a compromised school experience—if they can enroll at all. Discriminatory admissions practices are robbing Lebanese children of an education. And without any real options for a quality education, thousands of children with disabilities are being left behind.

There is no clear data on the number of children who have been denied an education in Lebanon, because the government does a poor job of keeping statistics on children with disabilities. But based on international estimates, Lebanon could have around 40,000 children ages 5 to 14—the country’s age for compulsory education—who have disabilities. They have the same right to education as all other children, without exception.

Human Rights Watch, is releasing a report this week documenting the barriers that children with disabilities across Lebanon face in getting an education. We found that schools routinely bar children with disabilities from admission, in violation of Lebanese and international law. And for those who manage to enroll, most schools do not take reasonable steps to provide them with a quality education alongside their peers. Few schools in Lebanon are physically accessible, and the government does little to provide the support that children may need to succeed.

Instead, many children with disabilities in Lebanon spend their days in government-subsidized institutions, which are not mandated to provide an education. And a lack of monitoring, poor evaluation mechanisms, and a dearth of appropriate resources raise serious concerns about whether these institutions fulfill the children’s right to an education.

And many children, like Basmah, stay home and receive no education at all.

There is no reason why children with disabilities should not be in mainstream schools alongside their peers. To end systematic discrimination and move toward education for all, Lebanon should adopt an inclusive education system, to enable children with disabilities to study in mainstream schools with reasonable support for academic and other forms of achievement. Inclusive education need not be costly, and benefits all children—not just those with disabilities—because it focuses on the diverse learning needs of all students and can lead to a higher quality education.

Lebanon has taken some steps in the right direction in recent years. The Education Ministry is planning a 2018 pilot program to include children with learning disabilities in 30 public schools and children with visual, hearing, physical, and intellectual disabilities in 6 schools. But this is still a far cry from what is needed and what Lebanese and international law require.

The Education Ministry should provide inclusive education in all its schools in a way that achieves maximum inclusion of children with disabilities in mainstream schools, including through adapting school curricula to cater to all learning needs in a classroom and through adequate teacher training. And the Ministry of Social Affairs should create and implement a time-bound plan to end the reliance on institutionalization of children with disabilities.

Denying children with disabilities the chance to go to school is a denial of their childhood and the chance to live independently, have a meaningful job, and be included in their communities.

Eighteen years after passing a law on the rights of people with disabilities, Lebanon needs to take serious and concrete steps to end discrimination in school admissions and ensure that all children can realize their right to a quality education.

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

Lebanon’s public education system discriminates against children with disabilities. Children with disabilities are often denied admission to schools because of their disability. And for those who manage to enroll, most schools do not take reasonable steps to provide them with a quality education.

 
(Beirut) – Lebanon’s public education system discriminates against children with disabilities, Human Rights Watch said in a report released today. Children with disabilities are often denied admission to schools because of their disability. And for those who manage to enroll, most schools do not take reasonable steps to provide them with a quality education. Instead, many children with disabilities in Lebanon attend institutions, which are not mandated to provide an education, or receive no education at all.
 
The 75-page report, “‘I Would Like to Go to School’: Barriers to Education for Children with Disabilities in Lebanon,” finds that although Lebanese law bars schools from discriminating against children with disabilities, public and private schools exclude many children with disabilities. For those allowed to enroll, schools often lack reasonable accommodations, such as modifications to the classroom environment and curricula, or teaching methods to address children’s needs. Schools also require the families of children with disabilities to pay extra fees and expenses that in effect are discriminatory.
 
“Discriminatory admissions practices are robbing Lebanese children with disabilities of an education,” said Lama Fakih, deputy Middle East director at Human Rights Watch. “Without any real option to get a quality inclusive education, thousands of children with disabilities are being left behind.”
 

School-age children in Lebanon.

Top photos, bottom left photo: © 2017 Amanda Bailly for Human Rights Watch. Bottom center and right photos: © 2017 Sam Koplewicz for Human Rights Watch
 
Under both Lebanese and international law, all children should have access to a quality education without discrimination. Lebanon’s Law No. 220, passed in 2000, guarantees everyone with a disability the right to education and other services, but it is not being put into practice, Human Rights Watch found. The educational path of children with disabilities in Lebanon is strewn with logistical, social, and economic pitfalls that mean they often face a compromised school experience – if they can enroll at all.
 
Human Rights Watch interviewed more than 200 children with disabilities and their families, government officials, disability rights experts, and education staff, and visited 11 public and private schools, 17 institutions, and 6 service providers.
 
Families said school officials gave various, sometimes brutal, reasons for denying their children admission. “While exclusion might not be a policy, it has become the custom,” said one disability rights expert.
 
Few schools in Lebanon are physically accessible and the government does little to provide accommodations children may need to succeed. Human Rights Watch found in nearly all cases that teachers and school administrators lacked training in inclusive education and that schools lacked funding to provide sufficient staff, in particular aides who can provide direct support to one or more children. Inclusive education involves children with disabilities studying in their community schools with reasonable support for academic and other forms of achievement.
 
“We are trying to do the best we can,” one teacher said. “We don’t have resources or the tools we need.”
 
For children who are not able to enroll in schools, 103 specialized institutions funded by the Social Affairs Ministry serve as the alternative for children with disabilities. Yet the educational resources at many of these institutions are of poor quality. And a lack of monitoring, poor evaluation mechanisms, and a dearth of appropriate resources raise serious concerns about whether these institutions fulfill children’s right to an education.
 
Conditions in some of the institutions are problematic, Human Rights Watch found. At two residential institutions visited, there was no separation between children and unrelated adult residents, providing inadequate privacy and supervision. In many cases, distance and the cost of transportation means that many children end up sleeping at institutions, effectively separating them from their families and communities for significant amounts of time.
 
There is no clear data on the total number of children with disabilities in Lebanon nor on how many are in school. Of the 8,558 Lebanese ages 5 to 14 registered with the Social Affairs Ministry as children with disabilities, 3,806 are in government-funded institutions, with a few others spread among public and private schools.
 
However other data raise concerns that tens of thousands of Lebanese children with disabilities may be excluded from Lebanon’s official disability registration. The United Nations Children’s Fund (UNICEF), World Health Organization, and World Bank estimate that 5 percent of people under age 14 has a disability, which would put a conservative estimate of the number of Lebanese children ages 5 to 14 with a disability at 40,000.
 
In recent years, the Lebanese government has taken steps in the right direction. The Education Ministry has made some efforts to include children with learning disabilities in public schools. It is planning a 2018 pilot program under which 30 public schools will include children with learning disabilities and 6 will enroll children with visual, hearing, physical, and moderate intellectual disabilities.
 
The right to an education applies to all children, including those with disabilities. As a state party to the Conventions on the Rights of the Child and the International Covenant on Economic, Social and Cultural Rights, Lebanon is obligated to provide free compulsory primary education and access to secondary education without discrimination to all children. Inclusive education benefits all students, not only students with disabilities. A system that meets the diverse needs of all students benefits all learners and is a means to achieve high-quality education and can promote a more inclusive society.
 
The obstacles that children with disabilities face are not unique to Lebanon. The UN Education, Scientific and Cultural Organization (UNESCO) estimates that more than one-third of the 121 million children at the primary and lower-secondary level who are out of school worldwide are children with disabilities.
 
The Lebanese government should implement and enforce existing disability rights legislation, Human Rights Watch said. The Education Ministry should provide inclusive education in all its schools in a way that achieves maximum inclusion of children with disabilities in mainstream public and private schools, including by adapting school curricula and hiring experienced personnel. The Social Affairs Ministry should create and implement a time-bound action plan for deinstitutionalization.
 
“Eighteen years after Lebanon passed a law ensuring children with disabilities could get an education, almost nothing has been done to make this a reality,” Fakih said. “Lebanon should urgently end its dependence on institutions, and ensure that children with disabilities can get a quality education in a classroom alongside their peers.”
Posted: January 1, 1970, 12:00 am

Summary

“We are always scared of tomorrow because the school could say we need to remove him.”
—Huda, the mother of Wael, a 10-year-old boy with autism, Beirut, April 13, 2017

Under the law, all Lebanese children should have access to education free from discrimination. Lebanon’s Law 220 of 2000 grants persons with disabilities the right to education, health, and other basic rights. It set up a committee dedicated to optimizing conditions for children registered as having a disability to participate in all classes and tests.

In reality, the educational path of children with disabilities in Lebanon is strewn with logistical, social, and economic pitfalls that mean they often face a compromised school experience—if they can enroll at all.

Lebanon’s public education system discriminates against children with disabilities. Children with disabilities are often denied admission to schools because of their disability. And for those who manage to enroll, most schools do not take reasonable steps to provide them with a quality education.

Basmah, a 9-year-old girl with Down Syndrome, puts on her own backpack every day as she gets in the car to accompany her siblings to school—but despite her enthusiasm, no school has accepted her because of her disability. Human Rights Watch interviewed 33 children or their families, who said they were excluded from public school in Lebanon on account of disability, in what amounts to discrimination against them. Of these, 23 school-age children with disabilities in Beirut and its suburbs, Hermel, Akkar, Nabatieh, and the Chouf districts, were not enrolled in any educational program.

In the cases Human Rights Watch investigated, most families said children with disabilities were excluded from public schools due to discriminatory admission policies, lack of reasonable accommodations, a shortage of sufficiently trained staff, lack of inclusive curricula (including no individualized education programs), and discriminatory fees and expenses that further marginalize children with disabilities from poor families.

There is no clear data on the total number of children with disabilities in Lebanon or on how many children with disabilities are in school. According to Rights and Access, the government agency charged with registering persons with disabilities, there are currently 8,558 children registered with a disability aged between 5 and 14 (the age of compulsory education in Lebanon). Of these, 3,806 are in government-funded institutions, with some others spread among public and private schools. But many of those registered do not attend any type of educational facility. Furthermore, these figures are low, given that the United Nations children’s agency (UNICEF), the World Health Organization (WHO), and the World Bank estimate that at least 5 percent of children below the age of 14 have a disability. Based on this statistic, a conservative estimate is that at least 45,000 children ages 5 to 14 in Lebanon have a disability. This discrepancy raises concerns that tens of thousands of Lebanese children with disabilities are not registered as such and many of these may not have access to education.

According to the Convention on the Rights of the Child (CRC), which Lebanon ratified in 1991, children with disabilities have the right to education, training, health care, and rehabilitative services. The Convention on the Rights of Persons with Disabilities, which Lebanon has signed but not ratified, promotes “the goal of full inclusion” while considering “the best interests of the child.” Law 220 mirrors this principle in requiring the best interest of the learner when it comes to inclusive versus special education.

As detailed by the UN High Commissioner for Human Rights, inclusive education has been acknowledged as the most appropriate means for governments to guarantee universality and nondiscrimination in the right to education. Inclusive education is the practice of educating students with disabilities in mainstream schools with the provision of supplementary aids and services where necessary to allow children to achieve their full potential. It involves the recognition of a need to transform the cultures, policies, and practices in schools to accommodate the differing needs of individual students and an obligation to remove barriers that impede that possibility.

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,” which recognizes disability as an interaction between individuals and their environment, with an emphasis on identifying and removing discriminatory barriers and attitudes in the environment. In Lebanon, however, authorities still seem to generally treat disability as a defect that needs to be fixed.

This report focuses on the barriers to quality and inclusive education for Lebanese children with disabilities who are at the age of compulsory education in Lebanon. It also assesses the segregated system of Ministry of Social Affairs (MOSA)-funded institutions, which is supposed to be the educational resource for children with disabilities kept out of school.

Although Lebanese law explicitly prohibits schools from discriminating against children with disabilities in enrollment decisions, admission to public and private schools continues to depend on the discretion of teachers and school directors, which leads to the exclusion of many children. When Huda tried to enroll her son Wael, a 10-year-old boy with autism, she went to many schools in the Beirut area. But she said one after another, they turned her away with explanations that included: “We don’t take handicap [sic]” and “We cannot accept your son, because the other parents might not approve.”

Most public and private schools that Human Rights Watch researched lack reasonable and appropriate accommodations that ensure a learning environment in which all children can participate fully. In Akkar, for example, Jad, a 9-year-old, music-loving boy who uses a wheelchair, attends a private school where the bathrooms are not accessible. As a result, Jad is forced to wear diapers, which his mother must come to school once a day to change. One of the few public schools in Jad’s district that accommodates children with disabilities has a wheelchair-accessible bathroom located on the second floor, but that floor is not wheelchair-accessible.

A 2009 survey conducted by the Lebanese Physical Handicap Union revealed that only 5 of 997 public schools observed met all of Lebanon’s physical accessibility standards for public buildings.

The education of children with disabilities is also hampered by a lack of reasonable accommodations, including basic physical accessibility in buildings; a lack of adequately trained teachers; a lack of an individualized approach to children’s education; and discriminatory fees and other expenses such as transportation.

Ahmed, a 5-year-old boy with a speech disability, attends a public school in Akkar. When he started his teachers could not understand him. In order for him to remain at the school, the school required his family to take Ahmed for speech therapy, and cover the costs, including transportation. The school did nothing to provide assistance or accommodations to Ahmed and his family. Possible classroom accommodations could include written assignments or written responses that someone else could read aloud.

A lack of community-based services and support means that many children with physical, sensory, or intellectual disabilities must travel long distances—spending up to six hours a day in a car—or sleep in residential institutions in order to access any educational, health care, or other support services, such as early childhood education.

Imad, a 4-year-old who has a hearing disability, was denied admission to a school by local school administrators in Hermel, a district in northeastern Lebanon, because he uses a hearing aid. His only educational options are either to enroll at a residential institution in Beirut, about 150 kilometers away, or to make daily trips to a school in the nearest large town, Baalbek—amounting to a 10-hour school day at a cost of US$100 per month. Both options were out of the question for Imad’s mother. “I have three other children to take care of,” she explained. With no alternative, Imad will stay out of school for the foreseeable future.

Under Lebanese law, specialized segregated institutions funded by MOSA—some of which are residential—are supposed to serve as the educational alternative to school exclusively for children with disabilities, yet the educational resources at these institutions are often of poor quality. Most of the specialized institutions are not even classified as schools by the Ministry of Education and Higher Education (MEHE). Lack of monitoring for quality education, a reliance on poor evaluation mechanisms, and a dearth of appropriate resources raises serious concerns about whether these institutions fulfill children’s right to education. “Most of them are just day care centers—nothing more,” a disability rights expert told Human Rights Watch.

Conditions in some of the institutions are problematic. At two institutions that Human Rights Watch visited, there was no separation between children and unrelated adult residents. At one institution, boys and men ages 5 to 50 slept in the same dormitory-style bedrooms. At another, the ages of residents in the same room ranged from 8 to 30.

The obstacles that children with disabilities face are not unique to Lebanon. Approximately 90 percent of children with disabilities in low income and lower-middle income countries do not go to school. The United Nations Educational, Scientific and Cultural Organization (UNESCO) estimates that children with disabilities represent more than one-third of the 121 million children at the primary and lower secondary level who are out of school worldwide.

In recent years, the Lebanese government has taken steps in the right direction. MEHE has made some efforts to include children with learning disabilities in public schools, and is planning a pilot program for 2018 to have 30 inclusive public schools around the country that will accept children with learning disabilities and 6 that will accept children with visual, hearing, physical, and moderate intellectual disabilities. The right to education applies to all children with disabilities. No matter how high their support needs are, every child, without exception, has the right to an education.

Private nongovernmental organizations and UNICEF have tried to make public schools accessible through building modifications that can help accommodate children with physical disabilities. Other private nongovernmental organizations pay for trained teachers and materials that allow children with visual disabilities to be integrated into the classroom. Some private schools have also made significant efforts to include children with disabilities in classrooms, including by providing them with a shadow teacher and additional supportive material, although usually at a financial cost to the child’s family.

Inclusive education benefits all students, not only students with disabilities. A system that meets the diverse needs of all students benefits all learners and is a means to achieve high-quality education. Inclusive education can promote a more inclusive society. As Khalil Zahri, the school director of Zebdine Public School put it, “the classes with children with disabilities are the most successful.”

Inclusive education stands in sharp contrast to the special education model, in which children with disabilities are taught in segregated schools outside the mainstream, in special programs and institutions and with special teachers. In this system, children with and without disabilities have very little interaction, which can lead to greater marginalization within the community, “a situation that persons with disability face generally, thus entrenching discrimination.”

While an inclusive education system cannot be achieved overnight, Lebanon should introduce new legislation to bring its national laws and practices in line with international law and standards. At the same time the Lebanese government should implement and enforce existing disability rights legislation, such as Law 220 of 2000, passed 18 years ago but never fully implemented. While Lebanon should dedicate more funds to make schools inclusive of all children, inclusive education does not have to be costly. A global World Bank study from 2005 found that even where modifications are necessary to ensure that buildings are physically accessible to people with disabilities, making the necessary adjustments usually costs only 1 percent of the overall building cost. A key step toward inclusion is to train teachers on inclusive education methods, which can be integrated into existing training.

While Lebanon has a history of laws that promote the rights of people with disabilities and recently has made some progress in providing education for children with disabilities, significant work is needed to implement those laws and bring Lebanon into line with international standards. By taking specific steps to protect the rights of children with disabilities and ensuring they have equal access to quality education in inclusive schools, the Lebanese government and its international partners could radically enhance the quality of life for many children with disabilities in Lebanon.

 

Recommendations

To Parliament

  • Amend Law 220 or pass new legislation that would require schools to take all necessary steps to accommodate children with disabilities.

To the Ministry of Education and Higher Education (MEHE)

  • Implement inclusive education in such a way as to achieve maximum inclusion of children with disabilities, including children with high support needs, in mainstream public and private schools. The Ministry should create a focal point, or directorate, with the responsibility to ensure inclusive education.
    • Develop and implement a longer-term inclusive education plan that clarifies the concept of inclusive education in line with international standards and outlines steps to include all children with disabilities, including those with high support needs, into mainstream schools.
    • Take necessary measures to provide individualized support to students with disabilities who attend public schools.
      • Add a disability-focused component to the Back-to-School information dissemination initiative detailed in the Reaching All Children With Education II (2017-2021) documents.
  • Hire personnel with required expertise and experience to ensure the general educational system is inclusive and capable of providing quality education to students with disabilities.
  • Develop guidelines and standards on inclusive classrooms for teachers and school administrators and develop procedures to ensure that they are met. Allocate adequate funding for inclusive education for children with disabilities, including targeted funding, in budgets and requests for development assistance.
  • Adapt school curricula for inclusive education. Develop a curriculum and assessment systems suitable for all learners, including children with intellectual or developmental disabilities.
    • Provide adapted academic material for children learning in sign language and Braille.
    • As per the law, ensure all official examinations accommodate the needs of all children with disabilities.
  • Ensure every school has a team dedicated to developing individualized education plans and to discussing accommodations and modifications when needed to meet a student’s needs.
  • Lay out standards and conditions for private sector schools for the inclusion of students with disabilities and supervise the application of such standards and conditions.
  • Revise the teacher training materials to reflect inclusive education methods and increase awareness about children with disabilities.
    • Train all teachers and school administrators on inclusive education methods and practical skills, including on the use of appropriate languages, modes, and means of communications, such as basic sign language.
    • Provide continuous training, support, and mentoring of teachers and assistants, including through resource centers and professional exchange.
    • Train teachers and school administrators on how to avoid and address bullying, teasing, or other discriminatory and degrading treatment of children with disabilities in the classroom, transportation, and the rest of the school.
    • Provide training for school directors on how to maintain an inclusive school.
  • Train and support parents of children with disabilities, including through regular parents’ meetings to exchange information and provide peer support.
  • Develop or strengthen early identification and intervention programs consistent with the inclusive approach to education and take steps to ensure children with disabilities have access to early childhood development programs.
  • Strengthen and regulate monitoring of schools, including special schools, to ensure that children have access to quality education.
  • Involve children with disabilities and their parents or family members in consultations and decision-making and monitoring processes. Develop strategies to increase community and family participation.

To the Ministry of Social Affairs (MOSA)

  • Allocate sufficient resources for the development and sustainability of a range of services and support for children with disabilities and their families so that they can attend schools on an equal basis with other children. Services should include assistance so that families of children with disabilities can look after their children and have full access to assistive devices, transportation, healthcare, and other necessary services. The services and support need to take into account those children who require intensive support or may be at risk of remaining in institutions indefinitely.
    • Ensure children with disabilities, their families, and disabled persons organizations are included in the development of services.
  • Create and implement a deinstitutionalization policy and a time-bound action plan for deinstitutionalization, based on the values of equality, independence, and inclusion for persons with disabilities.
    • Make sure that necessary services and support in communities focusing on inclusion of persons with disabilities is an important part of the deinstitutionalization plan and that persons with disabilities, disabled people’s organizations, and organizations working on deinstitutionalization are invited to participate in the formation of this plan.
    • Redefine the role of MOSA-funded institutions, including residential institutions, from places responsible for the education of children with disabilities to, instead, centers that provide extracurricular support and other necessary support services to meet educational and developmental needs of children with disabilities, including speech therapy, physical therapy, and educational support for children with disabilities when necessary.
    • When necessary, seek out the experiences of other countries that have fully undergone deinstitutionalization.
  • Recognize institutionalization based on disability as a form of discrimination and that institutionalization against the consent of older individuals might be a form of detention.
  • Develop procedures and tools to more proactively collect data on persons with disabilities in communities and provide more incentives for persons to register for a disability card.
  • Create standard procedures, policies, and a unified database of services and resources at the Ministry.
    • Publicize what resources (MOSA supported or private) are available for persons with disabilities in each region. Conduct needs assessments to determine where there are gaps in services.
  • Together with the Ministry of Education, carry out awareness-raising campaigns on the right to education, nondiscrimination, and other rights of persons with disabilities, targeting the public at large, teachers, school administrators, and parents.
    • Launch an information campaign to inform parents about what resources are available to their children.
  • Provide accessible and affordable transportation to enable children with disabilities to access schools, especially in rural areas where distances to schools may be greater.
    • Work together with other relevant ministries to ensure public transportation is free from violence against all children.
  • Encourage teachers and classroom assistants trained on inclusive education and with practical skills to include and support children with disabilities in mainstream public and private schools to live and work rural areas that are under-served.
  • Make funds available for public schools or private schools, if the family opts to send their child to a public or private school rather than a MOSA-funded institution.
  • Allow parents to receive financial support that would otherwise be distributed to residential institutions, if a family wants and can support a child with disabilities in the home.
  • Strengthen existing or establish new channels for people with disabilities to lodge complaints on laws that are not implemented or enforced.

To Multilateral and Bilateral Donors, UN agencies, and International NGOs

  • Include children with disabilities and inclusive education in existing and future programs and policies, especially teacher training.
  • Strengthen the capacity of the Lebanese government to implement an inclusive education approach through the development of stronger planning, implementation, and monitoring and evaluation processes and by encouraging greater collaboration among relevant ministries.
  • Ensure sufficient funding for inclusive education. Consider funding the government, organizations for people with disabilities and NGOs for programs to support children with disabilities and realize their rights, particularly the right to education.
  • Strengthen data collection on children with disabilities.
  • Help the Ministry of Education and Higher Education achieve inclusive education by developing, distributing, and raising awareness of appropriate and easy-to-use inclusive education materials and encouraging public discussion.

To the Government

  • Ratify the Convention on the Rights of Persons with Disabilities.

 

Methodology

This report is based on research conducted by Human Rights Watch researchers between January and June 2017 in the city of Beirut and its suburbs, Hermel, Akkar, Nabatieh, and the Chouf districts in Lebanon. Of the twenty-six districts spread throughout Lebanon’s eight governorates, Human Rights Watch selected these five districts to document the range of barriers children with disabilities face in areas that differ in population density, socioeconomic levels, religious affiliation, level of urbanization, and distance from major health care service centers.

Evidence used in this report is based on the experiences of 105 children and young adults with disabilities shared by them or their families. Human Rights Watch visited and conducted interviews in 6 public schools, 5 private educational service-providing centers, and 17 Ministry of Social Affairs (MOSA) funded institutions. We also interviewed 30 disability rights and education experts and advocates and 13 government officials.

In Akkar, Hermel, Nabatieh, and the Chouf, Human Rights Watch visited 9 of the 10 MOSA-funded institutions that offer education for children with disabilities in those regions, and spoke with 63 staff and in some cases students and their parents there.

Due to the size of Beirut and its suburbs, researchers consulted with experts in the disability rights field to select a representative range of educational opportunities to visit. These institutions included Dar al-Aytam al-Islamiya, Blessed, Mabarrat’s al-Hadi, and al-Zawark.

Aside from these districts, researchers visited additional institutions in Baalbek, Saida, and two in Zahle. In total, Human Rights Watch visited 17 institutions, 7 of which were residential.

Researchers also visited six private facilities that fill some gaps in government services in these areas, including speech therapists, physical therapists, physiotherapists, psychologists, after-school tutoring, and in-home services.

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 informed consent to participate and informed consent for their story to be shared.

Interviews with children were conducted in Arabic with the assistance of an interpreter, fluent in Arabic and English. Interviews with parents, institution staff, government officials, and representatives of Lebanese nongovernmental organizations (NGOs) were largely conducted in English or Arabic with the assistance of an interpreter. In two cases, a teacher from an institution used sign language to facilitate communication between researchers and children with a hearing disability at the institution.

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 withheld other details, such as the name of the institution where an interview took place. We have also withheld names and other details about some institutional staff to protect them from possible reprisal.

Children with disabilities and their families who were interviewed were selected through outreach via MOSA-funded institutions, services providers, community leaders, and NGOs.

This report focuses on Lebanese children, and may not account for additional barriers faced by Syrian or Palestinian refugee children with disabilities.

 

I. Background

Globally, around 90 percent of children with disabilities in low income and lower-middle income countries do not go to school.[1] The United Nations Educational, Scientific and Cultural Organization (UNESCO) estimates that children with disabilities represent more than one-third of the 121 million children at the primary and lower-secondary level who are out of school worldwide.[2] There is no clear data on the total number of children with disabilities in Lebanon or on how many are out of school. In fact, data on both the size of the overall school-age population in Lebanon and age-specific prevalence of disability within populations throughout the world is so scarce that only general estimates of the total number of children with disabilities are available. According to the Lebanese government’s figures, there are 8,558 compulsory school-age children registered with a disability in the country.[3] But based on global estimates by international agencies finding that at least 5 percent of children below the age of 14 have a disability, and that 17.4 percent of Lebanese nationals are between 5 and 14 years old, the reality may be that more than 45,000 Lebanese children of compulsory school age have a disability.[4]

Global statistics from 2013 showed that of the 10 percent of all children with disabilities who were in school, only half completed their primary education, with many leaving after only a few months or years, because they were gaining little from the experience.[5] Children with disabilities who attended school were more likely to face exclusion in the classroom and to drop out.[6]

Lebanese Education System

The education system in Lebanon is overseen by the Ministry of Education and Higher Education (MEHE). Education in Lebanon is split into three phases: pre-school, basic, and secondary.[7]

The basic phase, for children ages 5-14, is compulsory and is divided between grades 1-3 (cycle one), grades 4-6 (cycle two), and grades 7-9 (cycle three). At the culmination of cycle three, students take a national exam called the Brevet. The Brevet score helps to determine a student’s placement in further education and whether they will continue on an academic or technical track for secondary school, which comprises grades 10-12. After grade 12, students take the official Lebanese baccalaureate exams, which are required for admission to most universities in the country.[8]

Academic establishments are broadly divided into public, semi-private, and private schools, and are accredited by MEHE. There are 1,279 public schools in Lebanon, which MEHE funds and supervises.[9]

Law 220 guarantees equal opportunities within all public and private educational or learning establishments for persons with disabilities, and stipulates that MEHE shall cover the educational and occupational costs of specialized institutions when called for by the Ministry of Social Affairs (MOSA).[10]

MOSA-Supported Institutions

Article 61 of Lebanese Law 220/2000 stipulates that MEHE is charged with financing special schools and education for children with disabilities.[11] However, MEHE representatives told Human Rights Watch that children with physical and intellectual disabilities are not part of the MEHE school system.[12] Although Human Rights Watch found that some children with disabilities attended public schools, the vast majority of children with a disability who were receiving any educational support from the government were securing it is through the MOSA-funded institutions.

Through contracts with private organizations, MOSA provides funding for a limited number of children to attend one of the 103 segregated institutions it supports across the country. Many children with disabilities are not even able to attend a MOSA-funded institution due to limited capacity.[13]

There is little uniformity among these different institutions, which may be religiously affiliated, politically affiliated, or both. Some of the institutions offer residential spots. Institutions that Human Rights Watch researched vary in size from 32 residents to 600, and in the ages of their residents. One institution Human Rights Watch researched accommodated children from 1 to 12 years old; another accommodated residents from 4 to 80 years old.

While the characteristics of these institutions vary greatly, their contracts with MOSA are largely standardized. Where the contracts do vary is in the number of children with certain disabilities that the institution will accept, the type of services the institution offers, and how many residential or non-residential spots an institution can have. MOSA provides funding according to a daily rate, which varies based on the factors mentioned above, but which has not changed since 2012. These contracts are not determined by the needs in particular regions, but rather they are often the result of a negotiation between institutions and MOSA.[14]

While some of these institutions provide academic services, there is no mechanism that monitors for quality of education at institutions. According to interviews with MEHE, MOSA, and institutions, no institutions are supervised or monitored by MEHE. Only 1 of the 17 that Human Rights Watch visited was registered with MEHE as an official school. MOSA conducts monitoring visits to check the quality of the facilities, but not their educational standards.

Inclusive Education Model

In an inclusive education system, all students learn in the same schools in their communities regardless of whether they are “disabled and non-disabled, girls and boys, children from majority and minority ethnic groups, refugees, children with health problems, working children, etc.”[15] Inclusivity requires that the content and methods of education are modified and that the system provides support, as needed, to meet the diverse needs of all learners.[16] Inclusive education therefore 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.”[17] Studies have shown that students with disabilities achieve better academic results in an inclusive environment when given adequate support than they do in segregated, “special education” settings.[18]

Inclusive education focuses on removing the barriers within the education system itself that exclude children with special educational needs and cause them to have negative experiences within school.[19] It requires teachers and classrooms to adapt, rather than for the child to change. Support services should be brought to the child, rather than relocating the child to the support services.[20] In an inclusive classroom, children with disabilities have individual education programs to guide the teacher, parents, and student on how to achieve the best educational outcomes for the child.

Inclusive education is distinct from two other approaches to educating people with disabilities.[21] One is segregation, where children with disabilities are placed in educational institutions that are separate from the mainstream education system. Another is integration, where children are placed in mainstream schools, but only if they can adapt to these schools and meet their demands. Unlike inclusive education, integration tends to regard the child with a disability rather than the school as the one who needs to change.[22] Inclusion focuses on identifying and removing the barriers to learning and changing practices in schools to accommodate the diverse learning needs of individual students.

Specialized classes within mainstream schools may be beneficial for some students with disabilities to complement or facilitate their participation in regular classes, such as to provide Braille training or physiotherapy.[23]

The Convention on the Rights of Persons with Disabilities (CRPD) requires states parties to take measures to ensure the full and equal participation of children with disabilities in education, including:

(a) Facilitating the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring;

(b) Facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community;

(c) Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development.[24]

Inclusive education stands in sharp contrast to the special or separate education model, in which children with disabilities are taught in segregated schools outside the mainstream, in special programs and institutions and with special teachers.[25] In this system, children with and without disabilities have very little interaction, which can lead to greater marginalization within the community, “a situation that persons with disability face generally, thus entrenching discrimination.”[26]

Disability Laws and Education

Lebanon still adheres to an outdated “medical model” that regards disability as an impairment that needs to be “treated,” “cured,” “fixed,” or at least rehabilitated.[27] In contrast, the United Nations adopted a rights-based approach, enshrined in the CRPD, which views disability as a result of the interaction between persons with physical, sensory, intellectual, or psychosocial impairments and attitudinal, communication, and environmental barriers that hamper their full participation in society.[28] Article 19, a human rights organization, points to this difference in approach as one of the reasons Lebanon has a significantly lower official recorded prevalence of disability than the global average: 2 percent, versus the World Bank and World Health Organization statistic that 15 percent of the world’s population has a disability.[29]

Lebanon has signed and ratified the Convention on the Rights of the Child, which obligates states to make primary education compulsory and free to all without discrimination.[30] It specifies that states should ensure that children with disabilities have effective access to and receive education, training, health care services, and rehabilitative services.[31] Lebanon has also signed, but not ratified, the CRPD, which promotes “the goal of full inclusion” at all levels of education, and obliges State parties to ensure children with disabilities have access to inclusive education, and that they are able to access education on an equal basis with others in their communities.[32] Inclusive education involves children with disabilities studying in their community schools with reasonable support for academic and other achievement.

In Lebanon, the National Commission for Disability Affairs was established in 1993 and was restructured by Law 220 in 2000 to be composed of four MOSA officials, two disability experts appointed by the Minister of Social Affairs, four elected representatives of disabled people’s organizations, four elected persons representing institutions, and four elected persons with disabilities.[33] In 1994, the commission created an implementing body—Rights and Access—charged with defining and ensuring the rights of persons with disabilities and facilitating access to these rights.[34]

Rights and Access developed a card identification system for persons with disabilities in Lebanon. A person may obtain such a card by going to one of seven centers around the country, operated by MOSA.[35] Lebanon recognizes 165 disabilities, based on the World Health Organization’s International Classification of Impairments, Disabilities and Handicaps from 1980.[36] Lebanon still uses this publication even though in 2001, the World Health Organization replaced this diagnostic tool with the International Classification of Functioning, Disability and Health.[37] Persons who receive a disability card are legally entitled to a range of benefits, such as life insurance, tax benefits, and assistance paying for healthcare, educational, and rehabilitative services.[38] However, instead of a right to inclusive quality education on an equal basis with other children, educational services include specialized education, learning, or occupational training until the age of at least 21.[39]

Law 220/2000

In 2000, the Lebanese parliament passed Law 220 on the Rights of Persons with Disabilities, guaranteeing “adequate opportunities for the education and learning of all, from children to adults, within all educational or learning institutions of any kind, within their regular classes and in special classes if called for.”[40]

Law 220 bans schools or learning institutions from making admissions decisions based “upon the soundness of an individual’s constitution, body, or abled-ness, or lack of handicap, infirmity, defect or other formulations.”[41]

The law further states that “any applicant with a disabled ID card” has the right to “pursue studies in the educational or learning institution of his choice, by ensuring favorable conditions to allow him to take entrance exams and all other testing during the school year in every occupational or university stage.”[42]

The law sets out accessibility standards for the construction of buildings intended for public use, sets a hiring quota of three percent for persons with disabilities for public and private businesses, creates committees to write and implement rules that would support people with disabilities, and codifies the right to health, transportation, and education—among others—for people with disabilities.[43]

According to Law 220, the Ministry of Education and Higher Education is responsible for costs associated with the education of children with disabilities.[44] Law 220 stipulates that MOSA is responsible for all decisions related to whether an individual receives a disability card and what services, equipment, or tax benefits that person receives.[45]

The law also creates a number of committees charged with developing and implementing policies to support persons with disabilities. The Disabled and Special Needs Education Committee, for example, which must include a person with a disability from the National Commission for Disability Affairs, is charged with organizing all matters related to the education of persons with disabilities, including procedures and techniques for setting optimal conditions to allow every student who holds a disability card to participate in all classes and tests in all academic, occupational, and university stages.[46]

The committee is also charged with providing advice, technical and educational assistance, and necessary guidance to all educational institutions where persons with disabilities access education.[47] Finally, the committee is supposed to establish a national audio library, a national raised-print library, and a unified sign language.[48] Further committees exist to create and implement policies around different areas of life for persons with disabilities such as sports and transportation.[49]

However, while Law 220 is wide ranging and ambitious, 18 years after it was passed only a fraction of its provisions have been implemented, particularly with regard to education.[50] The committees, for instance, have rarely met, and they have implemented almost no policies to ensure access to education or reasonable accommodations while in school.[51] Neither the Ministry of Education and Higher Education nor the Ministry of Social Affairs have implemented the articles on reasonable accommodation in Law 220. Furthermore, the law still perpetuates the idea of segregated, special schools and should be revised to reflect the current global thinking on inclusive education.

Recent Developments

There have been some positive developments in recent years to improve access to education for children with physical, sensory, and learning disabilities—although not children with intellectual or psychosocial disabilities—in public schools in Lebanon.[52]

The Ministry of Education and Higher Education has begun working on a project for the 2018 academic year to provide 30 of the public schools in Lebanon with full-time specially-trained teachers and a mobile team of school aides that can provide extra support for children with learning disabilities and physically accessible facilities for children with physical disabilities. In addition, with the help of the UN Children’s Agency (UNICEF) and a German development organization, the Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ), 20 public schools have been refurbished so their physical infrastructure is accessible to children with physical disabilities.

To cover some of the gaps in educational services provided by the government to children with physical, sensory, and learning disabilities, nongovernmental organizations have in recent years provided accommodations for children with certain disabilities in public schools. For example, the Youth Association for the Blind (YAB) provides typewriters and academic material in Braille as well as trained teachers who can shadow children with visual disabilities and teach children to read and write in Braille. This past year, YAB supported 22 students, and their parents, so the children could attend public school.[53] Organizations like Trait d’Union and the Lebanese Center for Special Education have also conducted trainings and provided some resources in public schools to help children with “learning difficulties” receive extra support.[54] This normally involves break-out classrooms where children receive more personalized attention in smaller group settings.

II. Barriers to Inclusive and Quality Education

“While exclusion might not be a policy, it has become the custom.”
—Sylvanna Lakkis, President of the Lebanese Physical Handicap Union, Beirut, July 5, 2017

Under international human rights law, all children have a right to free, inclusive, quality primary education, free from discrimination. However, many children with disabilities in Lebanon find themselves completely excluded from any educational opportunities.

Children with disabilities in Lebanon are often denied admission to schools because of their disability. Families said school officials gave different, sometimes brutal, reasons for denying their children admission.

Rana, a 25-year-old with an intellectual disability, was told at 8 years old that she had to leave school because she was “taking the spot of another student,” her mother recalled. “They would sit her in the courtyard.” Rana never returned to school.[55]

Cultural stigma around disability in Lebanon is an underlying factor for this denial of education. One family said that a teacher told them their child, who has a learning disability, “should sell gum or graze cattle” rather than be in school.[56] A Ministry of Social Affairs official in Hermel estimated that 80 percent of families with children with disabilities do not send them to school but rather keep them at home, and that the main motivation for this is shame. Such an assessment is consistent with UNICEF’s finding that globally, “The greatest barriers to inclusion of children with disabilities are stigma, prejudice, ignorance and lack of training and capacity building.”[57]

The UN Committee on the Rights of Persons with Disabilities has stated, “it is necessary to change attitudes towards persons with disabilities in order to fight against stigma and discrimination, through ongoing education efforts, awareness-raising, cultural campaigns and communication.”[58]

Even when children with disabilities are allowed to attend school, they are not provided a quality education because of a lack of reasonable accommodations, accessible materials, and discriminatory fees and expenses.

Public Schools

“In public schools, the government doesn’t allow children with disabilities. Especially if they look like they have a disability, they will not be allowed in.”
—Public school teacher, Hermel, February 16, 2017

There are 1,279 public schools in Lebanon, which the Ministry of Education and Higher Education (MEHE) funds and supervises.[59] In an interview with Human Rights Watch, ministry officials conceded that few schools in the country are inclusive or are even accessible to children with any kind of disability.[60] In the cases Human Rights Watch investigated, most families said children with disabilities were excluded from public schools due to discriminatory admission policies, lack of reasonable accommodations, a shortage of sufficiently trained staff, lack of inclusive curricula (including no individualized education programs), and discriminatory fees and expenses that further marginalize children with disabilities from poor families.

Denial of Admission Due to Disability

Since 2000, Lebanese law has prohibited any restrictions on admissions or entry into any institution of education or learning based on disability.[61] However, Human Rights Watch interviewed 33 children, or their families, who said they were excluded from public schools as a result of discrimination on account of disability.

Sylvanna Lakkis, President of the Lebanese Physical Handicap Union, an advocacy and support group for persons with disabilities, told Human Rights Watch that school directors and teachers who refuse to accept children with disabilities due to their own biases or social stigma face no ramifications. “While exclusion might not be a policy, it has become the custom,” she said.[62] In many cases, the stigma and misconceptions associated with disabilities lead parents, teachers, and school directors to fear having children with disabilities mixed into their student bodies.[63] According to Lakkis, this fear is so widespread that even parents with children who have a disability do not want children with other disabilities in the same class as them.[64]

Amer Makarem, director of the Youth Association for the Blind (YAB), told Human Rights Watch that teachers or school directors have the final say as to whether to include a child: in a number of cases, YAB has either not been able to include a child in a public school or had to stop providing assistance because a school director said he or she did not want a child with a visual disability in the classroom even though YAB was paying for the accommodations.[65]

The perceived cost and burden of including a child with a disability was another factor that excludes children from public schools. One public school director explained that most other directors have the misconception that “including children with disabilities in your school will be a financial burden.”[66]

Arbitrary decisions by local school staff appear to especially harm children with intellectual disabilities. A MEHE representative told Human Rights Watch that children with intellectual disabilities were not included in the public-school system, adding that while this is not official policy, it is the de facto reality since the decision is left to teachers and school directors.[67]

Basmah is a 9-year-old girl with Down Syndrome from Akkar who does not attend public school.[68] Basmah’s parents told Human Rights Watch that she puts on her backpack every day as her siblings get ready for school—but has nowhere to attend.[69] “I would like to go to school,” Basmah said. According to her parents, Basmah was denied enrollment by the principal at her local public school three years ago—the principal said that she “moves a lot” and so she cannot be in class with other children.[70]

Zahraa, a 5-year-old girl living in Hermel, has an intellectual disability.[71] Her mother told Human Rights that she tried to enroll Zahraa in a public school the previous year, but the principal called after a month to inform her that Zahraa had to leave because, “[the teachers] cannot leave all the other children and just take care of her.”[72]

Children with learning disabilities are also excluded from public schools. Human Rights Watch spoke with the mother of Rabih, a 9-year-old living in Beirut who is hyperactive.[73] He used to attend a private school, where “they used to put me out of the class,” Rabih told a Human Rights Watch researcher.[74] His mother tried to enroll him in a public school after the private school’s fees became too high for the family to afford.[75] Rabih’s family said they could not find a public school that would admit him.[76] He was out of school for two years before starting at a MOSA-funded institution.[77]

Barriers to Legal Redress

Although Law 220 has outlawed disability-based discrimination, Ghida Frangieh, a lawyer at Legal Agenda, a Lebanese non-profit that monitors and analyzes law and public policy, said few of the law’s components have been enforced.[78] “While there have been lawsuits focused on the right to work, the right to housing and accessibility of courts, I am not aware of any lawsuit aiming at enforcing the right to education for persons with disabilities,” she told Human Rights Watch.[79]

According to the law, the National Commission for Disability Affairs should undertake the task of filing or intervening in any lawsuit defending the rights of persons with disabilities.[80] However, according to officials who work for the implementing arm of the commission, no lawyer has ever been hired to fill that task.[81]

The law also states that anyone bringing a legal case to enforce their rights can have court fees waived.[82] “A lot of people are not aware of their rights and of the availability of judicial remedies. For instance, few people are aware that judicial fees are waived for complaints related to the disability law,” Frangieh told Human Rights Watch.[83]

Lack of Reasonable Accommodations in Public Schools

Human Rights Watch found that even when children were not explicitly denied admission to a public school, a lack of reasonable accommodations became a barrier to education. In the cases Human Rights Watch documented, it appeared that little to no accommodation is provided in mainstream schools for children with disabilities. One school director told a Human Rights Watch researcher that even though several students with physical disabilities were enrolled at the school, the school building does not meet the basic accessibility standards for persons with physical disabilities as set out in Lebanese law.[84]

In addition to a lack of physical accessibility, public schools lack sufficient, trained staff and appropriate material for a range of learners. Meanwhile, the lack of an individualized approach to children’s education and social development impedes many children with disabilities’ access to a quality education.

A prominent psychiatrist in Lebanon told Human Rights Watch that in general, public school teachers did not give children with learning disabilities extra time to finish an assignment or teach techniques which would allow children to participate in their education on an equal basis with their peers.[85]

According to information provided by MEHE to Human Rights Watch, only four public schools in Lebanon accommodate children with visual disabilities. MEHE officials were not aware of a single school that provided accommodations for children with hearing disabilities. They said less than a tenth of all public schools provide services for children with learning disabilities.[86]

Children with disabilities and their parents told Human Rights Watch that few teachers take the initiative to provide the children with reasonable accommodations and that, in some cases, teachers neglected them.[87]

A child’s right to receive appropriate and reasonable accommodations in school should not depend on whether they have a diagnosis or not. Accommodations in schools should be made by a group of individuals who are knowledgeable about a student’s abilities (parents, older siblings, teachers, counsellor – if there is one) and the types of accommodations that may meet the student’s needs. The teams may review information from the official evaluation, but more importantly, observations, student work samples, report cards, and medical records, to understand the student’s abilities, needs, behaviors, and achievements. The child, parents, and school staff should be included and bring any information they believe best describes the student’s abilities and needs.

According to an assessment of the situation in Lebanon conducted by UNESCO in 2013:

“The majority of schools, at least public schools, are still not fit to accommodate ... students with disabilities. Deficiencies are related to the unavailability [of] proper equipment, buildings, special teaching aids, and qualified special education educators.”[88]

Reasonable Accommodation in Practice: Openminds

Private actors have taken some positive steps to improve access to an inclusive education for children with disabilities in Lebanon. Openminds, a nonprofit organization established in 2013, donates equipment, pays to refurbish schools and train teachers so that a school can open or expand their inclusive education programs. So far, they have dedicated US$750,000 to six private schools and nine public schools throughout Lebanon. They have given $750,000 for research and $1 million for rehabilitative services for more than 200 persons with disabilities. The organization is helping to facilitate the employment of persons with disabilities, advocating with the government for greater respect for their rights, and providing training to teachers working with children with disabilities. The board, comprised mainly of parents of children with disabilities, is interested in helping fund schools dedicated to providing inclusive educational settings. While this is an important initiative, it is the responsibility of the government to ensure access to quality education for children with disabilities on an equal basis as others.

Physical Accessibility

Under international human rights and Lebanese law, public buildings, including schools, should, with limited exceptions, be accessible for people with physical disabilities.[89] In fact, few schools in Lebanon are accessible and the government does little to provide accommodations such as structural modifications or ramps.[90]

In 2009, the Lebanese Physical Handicap Union studied public schools in the Beirut and Mount Lebanon governorates—the two governorates considered by advocates and experts to be the most accessible for children with disabilities—and found that only five of the public schools surveyed met all six basic accessibility requirements for persons with physical disabilities: a wheelchair-accessible entrance, ramps where necessary, elevators where necessary, rooms spacious enough for wheelchair mobility, wheelchair-accessible bathrooms, and disability parking.[91]

MEHE representatives acknowledged that not all schools were accessible to students with physical disabilities but said that since 2002, all new schools were built for wheelchair accessibility.[92] However, Human Rights Watch visits to six public schools in the Beirut, Akkar, Nabatieh, and the Chouf districts, and discussion with an administrator about accessibility at a public school in the Hermel district, found that even some of the newer school buildings are currently inaccessible. Two of the schools were constructed after 2002, and—although originally accessible—were no longer accessible by 2017 due to subsequent physical adjustments.[93] For example, one school was split into two separate facilities by a wall, which blocked accessibility to the wheelchair-accessible bathroom for public school students. Human Rights Watch visited a public school in Beirut that used to be accessible but no longer is. According to the school director at Mohammad Chamel Elementary Public School, Mrs. Faten Edelby, there used to be an accessible garage and elevator that provided wheelchair access to pupils, but the municipality rented it in April 2013 and now the school cannot use that entrance.[94]

In Akkar, George Khalil, director of Forum of the Handicapped, a non-governmental group that works toward a better life for persons with disabilities and a more inclusive society, said that he knew of only two out of 166 public schools in the district that admit children who use a wheelchair.[95] Nidal Khoury, the director of Arc En Ciel in Halba, a non-profit dedicated to providing services for persons with disabilities, told Human Rights Watch that he had spoken with multiple families who were moving from Akkar to Tripoli in order to find schools that are physically accessible for their children.[96] Human Rights Watch visited Hrar public school, which according to Ahmad Othman, its director, is one of the only public schools in Akkar that accepts children with physical disabilities.[97] While the school had a wheelchair-accessible bathroom, it is located on the second floor—which is not wheelchair-accessible.

Only two of the six schools Human Rights Watch visited had children with physical and sensory disabilities. Five of the schools failed to meet MEHE’s standards—the ministry’s codification of Article 37 of Law 220 which ensures public buildings are accessible the persons with physical disabilities—because they lacked accessible bathrooms, entrances, classrooms, or lifts when necessary.[98]

According to a 2013 UNESCO report, only five public schools in the country had been made accessible to people with physical disabilities by MEHE.[99]

A public-school director in Akkar told Human Rights Watch that his school accommodates seven students with physical disabilities and two with speech disabilities. However, the school does not meet MEHE’s wheelchair accessibility standards, or provide reasonable accommodations and related support to children with disabilities, according to the director.[100]

In Hermel, municipality officials pointed Human Rights Watch to the largest public school, where 1,430 Lebanese children are enrolled in the “morning shift” and 767 Syrian children are enrolled in the “afternoon shift,” as the best example of a school that provides education to children with disabilities in the area.[101] However, an administrator at the school said that while there is an elevator in the school, the government does not allow it’s use because of the cost of electricity to run it.[102]

In the Chouf district, Human Rights Watch visited two schools that officials or non-governmental staff had said they believed were accessible. One of these schools, Mazraat El Chouf Mixed Intermediate Public School had a ramp and wheelchair-accessible bathroom on the ground floor, but no designated parking or accessibility to other parts of the school. The other, Baaklin public school, had a ramp in the front, but the one wheelchair-accessible bathroom was now part of a different facility, no longer accessible to the public school.[103] Neither of the school’s enrolled students included any children with physical disabilities.

The one public school Human Rights Watch visited that met a majority of the wheelchair accessibility standards was Zebdine public school in Nabatieh, which had an accessible ramp entrance, bathrooms, classrooms, and an elevator. The school also had wheelchairs available for students who entered without one, but needed one for the day.[104] According to Khalil Zahri, the school director, Zebdine is the only accessible school in the Nabatieh district.[105]

In 2016, UNICEF launched a project to refurbish public schools across Lebanon. Of the 61 refurbished in 2016-2017, nine were made wheelchair-accessible.[106] According to UNICEF, 55 of the 123 scheduled to be refurbished in 2017-2018 are supposed to be made wheelchair-accessible.[107] Other organizations such as the Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) are engaged in similar projects, where they are working to make another 10 schools accessible for at least the ground floor.[108]

Inclusive education does not have to be costly. For example, to improve physical accessibility it might be sufficient to move a class to the ground floor with no further building modifications necessary. Even where modifications are necessary to ensure that buildings are physically accessible to people with disabilities, making the necessary adjustments usually costs only 1 percent of the overall building cost, according to the World Bank.[109]

Lack of Accessible Educational Materials

Human Rights Watch found that public schools are not equipped with materials, tools, and systems that would enable the inclusion of children with disabilities in mainstream education. This includes a lack of textbooks and learning materials in accessible formats, such as Braille or audiotape, Braille machines, or sign language interpreters.

Lebanon’s local law guarantees these tools and services for children to access education. Law 220 specifically ensures reasonable accommodations for any academic tests including extended time, adjusted test materials (raised letters, large font, etc.), and assistance from other or specific techniques, such as Braille machines, and sign language interpreters. Without these accommodations children with disabilities cannot access a quality education on an equal basis with their peers.

Children and families told Human Rights Watch that visual aids and large print materials are not readily available for children with visual disabilities in public schools.[110] They also do not offer Braille and are not equipped with Braille teachers, except in rare cases.[111] As a result, most students who are blind or have low vision go to MOSA-funded institutions because mainstream schools are reluctant to accept them and provide reasonable accommodations.[112]

In some cases, it is only with the help of NGOs that public schools offer any accessible materials to students with disabilities. Representatives from MEHE told Human Rights Watch that the financial support and training assistance of the Youth Association for the Blind (YAB) was critical for public schools to enroll children with visual disabilities.[113] Amer Makarem, director of YAB, said the organization provides materials such as Braille typewriters and trains teachers to include children with visual disabilities in public schools.[114] He said that for the 2016-2017 school year, YAB helped 22 students in 4 different schools across the country.[115] MEHE representatives told Human Rights Watch that the YAB-assisted students were the only students with visual disabilities enrolled in public schools across the country.[116] There is no accurate data on how many out-of-school children with visual disabilities there are in the country.

In one case, Mustafa, a 26-year-old living in Akkar, told Human Rights Watch that he could not complete school because he did not receive any accommodations for his visual disability, such as raised letters or larger print.[117] Mustafa’s sight deteriorated in the fifth grade, when he began to have trouble seeing the board and reading his textbooks.[118] He dropped out of school two years later.[119] His 28-year-old sister Yasmine, who also has a visual disability, said she also dropped out of primary school because she did not receive any assistance.[120] She believed that in their case, the only benefit they were eligible to receive from their disability card was a tax exemption for purchasing a car. “What am I supposed to do with a car? I’m blind.”[121] Neither of them completed primary education.[122]

According to Makarem, it costs US$4,000 per year to include a child with a visual disability in public school by providing accessible materials, equipment, and teacher training—half the cost of a child attending and sleeping at one of the three main MOSA-supported institutions for children with visual disabilities.[123]

Makarem argued that MEHE should take responsibility for including more children with visual disabilities in public schools. He suggested that MEHE’s Center for Educational Research and Development (CERD), which is charged with setting the curriculum, could print textbooks in Braille to make public schools accessible for blind children.[124] CERD reported that they are working on a new, more interactive and inclusive curriculum.[125]

What Inclusive Education Can Look Like: Zebdine Public School in Nabatieh

Human Rights Watch researchers visited Zebdine public school, the only YAB-supported school in Nabatieh. As we arrived, Abbas, a 13-year-old, blind boy in sixth grade, was in the courtyard being led by a female classmate as they played tag with other students. “Sometimes the other children are jealous because everyone wants to be friends with [the children with disabilities],” Khalil Zahri, the school director, told Human Rights Watch. Abbas said that he loved school. “Honestly all the topics are great … I am friends with everyone in my class.” Abbas works privately with a specialist to read and write in Braille on a machine that YAB provides. He also receives all his academic material in Braille.

Shortage of Sufficient, Trained Staff

“We lack people who can teach my daughter.”
—Mother of a 7-year-old girl with an intellectual disability, Hermel, April 2, 2017

An important part of ensuring reasonable accommodation is training teachers, school administrators, and education officials in methods to support children with disabilities in the classroom. Without this support, a child’s education will be hindered at best, and completely denied at worst.

Maher, a 7-year-old boy with a speech disability living in Hermel, attends a local public school there.[126] “It gets him really angry and sad when someone mocks him [about his speech],” Maher’s mother said.[127] Maher’s parents said that he memorizes the material, but the teachers do not understand him in class.[128] “I like my friends at school and math class, but I don’t like my Arabic teacher. She gives me Xs,” Maher told a Human Rights Watch researcher. The school does not provide Maher with speech therapy, his parents said, yet school officials told them that if his speech does not improve, he will be expelled.[129] The family cannot afford a speech therapist.[130] Without this support, Maher’s educational progress is suffering and the chances of him being able to stay in school are slim, his parents fear.[131]

The consequences of failing classes that do not accommodate children with disabilities is borne by the children and their families. A school director informed Human Rights Watch that it is MEHE policy to expel a child if they fail three years of school.[132]

Human Rights Watch visited schools and families across Lebanon, and found in nearly all cases that teachers and school administrators lack training in inclusive education methods and schools lack funding to provide support to teachers to make accommodations. The few teachers who were trained to support children with disabilities were restricted from dedicating time to do so. For example, one school had just one teacher who was trained to provide additional support for children with disabilities, but the teacher could only dedicate 25 percent of her time to that task, as the rest of her time was needed elsewhere.[133] The school’s administrator told Human Rights Watch that the school would need four full-time teachers to meet the needs of students with disabilities.[134]

Layal, a 12-year-old girl with a hearing disability living in Saida, told Human Rights Watch that she would like to go to the public school close to home with her six siblings.[135] But because no one in the school can communicate with her in sign-language, she said, each day she travels 40 minutes to a MOSA-funded institution, where she receives an education alongside other children with disabilities.[136] The specialized institution provides education only until 9th grade and does not prepare children for the brevet, the test required for admissions to secondary school.[137] Layal wants to become a doctor, but is worried that she will not have academic opportunities after grade 9.[138]

According to Rima Allawi, director of Child First Association in Hermel, a private facility that offers speech therapy, academic help, and physical therapy, the children with hearing disabilities in public schools in the Hermel district do not receive reasonable accommodations, such as speech therapy. Without such support services, children are not able to participate in the classroom and eventually are expelled.[139]

Most of the children with hearing or speech disabilities whom Human Rights Watch researchers met did not have the help of a speech therapist. Many schools also lack staff who are trained to effectively communicate material to children with different learning styles. One public school administrator summarized a viewpoint common to all the administrators whom Human Rights Watch spoke with about children with disabilities: “We are trying to do the best we can, we don’t have resources or the tools we need. We need specialists.”[140]

A child psychiatrist confirmed to Human Rights Watch that the public schools are severely understaffed and under-resourced.[141] He noted that the lack of trained staff and early screening in public school is highly problematic because when disabilities go undedicated and unaddressed, more damage is done to the child’s educational progress.[142]

Ahmed, a 5-year-old with a speech disability, attends a public school in Akkar. His mother told a Human Rights Watch researcher that Ahmed does not have access to speech therapy in the school and she cannot pay for a private therapist—around LBP50,000 a month (US$33) for one session every other week. The local public school has already made him repeat a year and told her that Ahmed will be asked to leave at the end of the year if he does not significantly improve. Aside from the cost, his mother said that bringing Ahmed to the speech therapist is difficult due to the distance. “There should be a speech therapist in the school,” she said. Ahmed’s access to education will be impeded if the school does not provide the educational support he needs.

Rami, a 14-year-old boy living in Beirut who has a physical and an intellectual disability, does not receive adequate support in school.[143] His mother, Nour, told Human Rights Watch that she is concerned about Rami staying in his current school because “there is no one to help him,” and that “seeing friends getting high grades affects him negatively when he struggles and does not.”[144] Rami said that he does not want to leave his school, but his remarks imply that he relies more on his friends than on school staff for support: “I want to stay at the same school. My friends help me and are always beside me,” he said proudly.[145]

Kareem is a 12-year-old boy living in the Chouf region.[146] He has a learning disability, but although he has already changed schools and repeated two years of school, he still does not have access to trained teachers and educational support.[147] According to Kareem’s mother, the school he currently attends says that he is not learning in class.[148] However, when Kareem’s mother asked the school to provide classroom support, they responded: “One teacher cannot sit with him and leave the rest of the class.”[149] Kareem’s mother is worried that without some change, he will continue to fail and be asked to leave school.[150]

Five of the schools Human Rights Watch visited had implemented the Lebanese Centre for Special Education (CLES) program, and teachers said they found it helpful. CLES is one of four programs (including SKILD, Restart, and Trait d’Union) that provide educational training to teachers so that they are prepared to give support to children who struggle academically.

The CLES program is also establishing learning support classrooms in 200 of Lebanon’s 1,279 public schools.[151] Children attend one-on-one or small group instruction in these learning support classrooms. The program is geared toward first, second, and third graders with what MEHE terms “learning difficulties.” Children do not receive this potentially vital support unless they have been diagnosed with a learning difficulty, fall into that age range, and are at one of these schools. Many have a learning disability but have not been assessed as needing the support.

Teachers said that children who did receive extra help from the CLES program benefited substantially. “We wish this CLES program would spread all over Lebanon,” a CLES instructor said.[152] “It gives us motivation that the children are happy and want to learn. Sometimes children outside the program want to join.”[153] However, the same teachers said they still did not have the resources they needed to appropriately accommodate all students and that there was not enough follow-up from CLES to ensure the quality and implementation of the program.[154]

Human Rights Watch found that the lack of trained teachers and other academic staff to support children with disabilities was partially due to a lack of opportunities to obtain that training. According Asma Azar, senior lecturer in special education at the University of Saint Joseph (USJ) in Beirut, there are only six centers in Lebanon that train teachers on inclusive education methods.[155] Azar estimates that around 60 students graduate from these programs every year, but many change fields or go to other Arabic-speaking countries.[156] “We do not have enough teachers in relation to the students,” she said.[157] “Most of the [instructors] in special education are not qualified.”[158]

Instead, all teachers should be trained in inclusive education methods, which have a track record of benefitting all children, not just children with disabilities.[159]

In Akkar, representatives at First Step Together Association (FISTA) North, an association of schools for children with intellectual disabilities based in north Lebanon, told Human Rights Watch that “there is a lack of human resources,” including just one speech and one psychomotor therapist in the Akkar district, for an estimated population of around 330,000 people.[160] A MOSA official told Human Rights Watch that there were only two psychotherapists, one specialist in ergotheraphy (a form of therapy that uses physical activity to support persons with disabilities in basic life activity), and no speech therapists in the Chouf (with a population of some 166,140 people).[161]

According to the same official, specialists mainly came from Beirut to service the district.[162] Dr. Weam Abou Hamdan, director of the National Rehabilitation and Development Center in the Chouf, similarly told Human Rights Watch that it was particularly difficult to find a qualified team of specialists.[163]

Human Rights Watch found an even worse situation in Hermel, a district with an estimated 48,000 people.[164] According to a MOSA official, there is only one speech therapist who travels regularly to Hermel from Beirut.[165] The same official told Human Rights Watch that there were no speech therapists in Baalbek, the nearest city.[166] Heba lives in Hermel with her 6-year-old, Nadine, who has a physical and an intellectual disability. Heba explained to Human Rights Watch, “We lack people who can teach my daughter.... We wish they offered physical therapy or ergotherapy in the area.”[167]

Discriminatory Fees and Expenses

“If you don’t have a good income, the child has no hope.”
—Mother of a 12-year-old child with a disability, Beirut, April 13, 2017

Children with disabilities who attend public schools must often pay more fees than children without disabilities. These include additional transportation fees (i.e., specially outfitted vehicles or assistants), fees for classroom assistants, homework helpers, speech therapists, and other related support services outside school. These services are not only necessary to ensure a quality education, but in some cases, are required by schools for students to remain enrolled.

Under the UN Convention on the Rights of Persons with Disabilities (CRPD), discrimination is any “distinction, exclusion or restriction … which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms.”[168]

Human Rights Watch spoke with 29 families who had children paying for or hoping to find supplemental services to compensate a lack of reasonable accommodations at their public school in Akkar, Beirut, the Chouf, Hermel, and Nabatieh.

Tarek, a 9-year-old boy with a learning disability in the Chouf, is struggling in school, his mother told Human Rights Watch.[169] She had been sending him to an afterschool academic program, but after two years, could no longer afford the additional US$200 a month.[170] She said Tarek’s school administration told her that if he fails this year, he will have to leave the school.[171] Tarek’s mother said he gets no educational support in school and his grades are not improving. “He’s really smart. I just want to get him the help he needs,” she said.

Cost-related barriers to children’s attendance at public schools undermine the purpose of inclusive education, which is to “respond to the diversity of needs of all learners,” and to ensure the “full development of human potential and sense of dignity and self-worth.”[172]

Private Schools

Article 60 of Law 220 bars “any educational or learning institution, official or private, of any kind” from making admissions decisions based on a student’s disability.[173]

However, Human Rights Watch found that children with disabilities are regularly denied admission to private schools and, if allowed to attend, are required to pay discriminatorily higher fees than other students. Human Rights Watch spoke with seven parents who said that their child had been denied admission due to disability by at least one private school, and often by several.

In Beirut, Human Rights Watch spoke with the mother of Wael, a 10-year-old boy with autism.[174] Huda, his mother, said she went to 10 schools, “most of the schools in the Beirut area,” but that one after another they turned her away with explanations that included: “We don’t take handicap [sic]” and “We cannot accept your son because the other parents might not approve.”[175]

Huda said she finally found a private school in Beirut that would accept Wael. But she is concerned her son will be dismissed by the principal because of his disability.[176] “We are always scared of tomorrow because the school could say we need to remove him,” she said.[177]

Additional Fees

Human Rights Watch found that when children with disabilities were able to attend a private school, they paid significantly higher fees for tuition or additional services than children without disabilities, often as an explicit condition for their enrollment. All 11 children with disabilities whose cases are documented in this report and who attended private schools had an additional expense or needed to pay for an additional service if they had a disability. These extra fees for an essential right constitute a form of discrimination against children with disabilities, under both Lebanese and international law.

Rita’s 9-year-old son Mustafa is hyperactive and has difficulty learning.[178] He is now at a private school, at a cost of US$7,000 per year, which is twice the regular tuition, because of the support the school says his disability requires.[179] Rita told Human Rights Watch that Mustafa is happy at this school, but because she is unable to make all the payments he ends up staying at home for several months out of the year.[180] The costs weigh heavily on the family: Rita has removed her other two children from private school and moved in with her husband’s family in order to pay all the bills.[181]

Nisreen Chamseddine, an education coordinator at Lebanese Autism Society, told Human Rights Watch that in order to enroll in their program, which provides shadow teachers for certain private schools, families must pay US$13,000 a year, on top of the regular private school tuition of $3,000-$5,000.[182]

Leyla Raouda, the school director of Heritage College in Beirut, told Human Rights Watch that children with disabilities start off by paying twice the regular tuition fee of US$4,000 per year at the school in order to cover accommodations such as shadow teachers, speech therapists, etc., but that the price is sometimes lowered if the school finds that the child does not need a lot of resources.[183]

Zahraa, the 5-year-old girl from Hermel, could not find a public school or a suitable MOSA-funded institution.[184] Her mother told Human Rights Watch that she attends a private school.[185] However, due to the high costs, Zahraa is not able to regularly attend.[186] With the cost of speech therapy taking priority, Zahraa was not regularly attending school when Human Rights Watch met her in April 2017.[187]

Human Rights Watch found that at some private schools, families had to pay for accommodations themselves in order to make the school accessible for their child.

In Akkar, Human Rights Watch spoke with Jad, a 9-year-old boy in a wheelchair.[188] According to his mother, Jad attends a private school because it is the only one in the area with an accessible entrance.[189] She explained, “Schools here do not have children who use wheelchairs.”[190] The school has no elevator, so Jad’s family had to hire a person to carry him up and down the stairs between classes until the school arranged for all his classes to be held on the ground floor.[191] His mother told Human Rights Watch that the school’s bathrooms are not accessible, so Jad must wear a diaper. His mother comes to school once a day to change it.[192] Despite the distraction and adversity that Jad must cope with on a daily basis, when talking with a Human Rights Watch researcher, he displayed a positive attitude about school, his friends, and playing the piano.[193]

Other Obstacles

In cases Human Rights Watch investigated, several other factors also led to the exclusion of children with disabilities from quality education. These factors include a lack of community-based support services, information, awareness, and poor data collection.

Denial of Support Services

Human Rights Watch found that many communities lack affordable resources for children with disabilities who need additional support. According to Nisreen Chamseddine, from the Lebanese Autism Society, communities need more rehabilitation centers, homework centers, and informative resources for parents to educate themselves on good practices for raising children with disabilities at home.[194]

International law obligates Lebanon to provide services to children and families so that children with disabilities can be “fully included in the family and community.”[195]

For children who are able to attend public school, this extra support can be essential for keeping them in school. Human Rights Watch spoke to 21 children and their families who were able to attend a public school, but were either struggling to stay or had been expelled because they did not receive tutoring, speech therapy, or other needed types of support.

These services can also serve as the only form of support that many children with disabilities receive. A mother in Nabatieh told Human Rights Watch that her daughter, Sarah, 7, who has a developmental disability, was expelled from four public schools since she was not able to communicate in class.[196] Out of school, the only service Sarah has access to is occasional private therapy sessions.[197] “She needs more, but there are not enough resources to give her,” her mother said.[198] This issue more severely effects populations in underserved districts far from the capital, such as Hermel and Akkar.

The Case for Community-based Services: Children First Association and
Borj El Barajneh’s Social and Health Center

Families that live in areas where community-based services are present say there is a positive impact. Centers in Hermel and Beirut offer various resources, none of which are supported by MOSA. In Hermel, eight families said that the Children First Association, a private therapy and after-school program, was a great resource for many children and parents. There, children received homework help, speech therapy, and other assistance. Rima Allawi, its director, said many more children could benefit from a center like hers, but their families cannot afford the costs. In the Beirut suburb of Borj El Barajneh, a Social and Health Center hosts free or highly discounted physical therapy, sensory therapy, vocational therapy, and other programs for persons with physical and intellectual disabilities. A family that takes advantage of these services told a Human Rights Watch researcher that with regular physical therapy, their 3-year-old daughter who formerly could not stand or walk on her own had made significant improvements.

Poor Identification of Needs and Support

“It is very common for MOSA [reports] to be wrong.”
—Administrator of MOSA-funded institution, Akkar, March 2, 2017

The current system for assessing children’s needs and creating individualized education programs in Lebanon is not sufficient. Currently the reports produced by MOSA simply state the doctors’ classification of a child’s disability. A diagnosis from one of MOSA’s seven centers is required to receive a disability card, which is needed to access all services and accommodations provided by the government.

“Sometimes a child will come with a report, but it is not precise, comprehensive, or clear,” an administrator of a MOSA-funded institution told Human Rights Watch.[199]

Administrators at MOSA-funded institutions reported that children’s diagnoses were occasionally wrong and lacked detail.[200] For example, nine administrators from institutions whom Human Rights Watch spoke with said that some portion of MOSA’s diagnoses were regularly incorrect, for example, the common misdiagnosis of children with autism as having “mental retardation.” Many children’s reports retain this diagnosis, even after their disability card is renewed.[201] The result is confusion among parents and a significant burden on schools or MOSA-funded institutions to identify a child’s needs and develop an appropriate educational program. Twelve institutional administrators said that they re-test at least a portion of the children at their institutions to check for this.

A student’s educational program and decisions on what support to provide should not depend upon a diagnosis. Treatment, therapy, or educational support should be tailored to a student’s individual needs, not to the name of their condition. However, because a person with a disability is not entitled to receive benefits unless the person has a diagnosis and a disability card, it is important to ensure that a child’s condition is not misdiagnosed. Incorrect diagnoses should be corrected.

Dr. Moussa Charafeddine, who conducts student evaluations and sits on the National Commission for Disability Affairs’s diagnostic and rehabilitation committee, described the current process as more of a classification, or labeling, than an evaluation of a child’s needs and strengths.[202] He noted that some of the people doing the evaluations are not qualified.[203] He said it is a five-minute procedure, in which he might review another doctor’s paperwork or ask basic questions, so that he can “cover 40 people in 3 hours.”[204]

Dr. Weam Abou Hamdan, director of the National Rehabilitation and Development Center, a MOSA-funded institution, said the institution is required to routinely re-test children to determine what kind of academic and other support they might benefit from.[205]

In some cases, children have been barred from receiving government-subsidized care due to a misdiagnosis. Human Rights Watch spoke with the family of Samer, a 7-year-old living in Akkar, whose family said that a MOSA-sponsored doctor determined that Samer had autism after an assessment that Samer’s mother said lasted no more than five minutes.[206] She explained that the doctor only wrote down what she told him another doctor had told her. Based on interacting with Samer, a specialist at FISTA North, a MOSA-funded institution, disputed that diagnosis, Samer’s father said. According to the new FISTA diagnosis, he does not have autism. Nonetheless, the original diagnosis still bars Samer from attending FISTA North, since the institution’s contract with MOSA does not include children with autism. Over the last two years, Samer’s family has not been able to get a full and adequate assessment from a MOSA-sponsored doctor.[207] They have also not found a different institution or a mainstream school that will accept Samer and meet his educational needs nearby, so he remains out of any educational institution.[208]

As evidenced by this example, the Lebanese system focuses heavily on a medical approach to disability. Instead, a thorough evaluation and comprehensive individualized education program is essential for providing quality education to children with disabilities. Several national disability advocates and experts agreed that more in-depth and individualized evaluations are necessary.[209]

To best support students, a group of individuals who are knowledgeable about a student’s abilities and the types of accommodations the student may need, should conduct an assessment. A dedicated team at each school should invite the student and his or her parents or caregivers to participate, and should include at least two individuals who can speak to the students’ abilities and skills, interpret reports or evaluations, and share information about the accommodations necessary and available to meet the student’s needs.

The teams may review information from the official evaluation, but also observations, student work samples, report cards, and medical records in order to understand the student’s abilities, needs, behaviors, and achievements. Teams should review the individualized education program on a regular basis and adjust the accommodations and modifications as necessary.

Failure to Collect and Maintain Statistical Information

Collecting and maintaining accurate information about the needs and services available is key to creating and implementing adequate services for children with disabilities. According to UNICEF, “Consistent and accurate information on children with disabilities helps to make an ‘invisible’ population ‘visible’ by demonstrating the extent and, indeed, the normality of disability.”[210]

Article 31 of the Convention on the Rights of Persons with Disabilities compels states to collect data on persons with disabilities.[211] The Committee on the Rights of the Child called on Lebanon in 2017 to expeditiously improve its data collection system including by disaggregating by disability, among other categories.[212] Lebanon has not yet collected and maintained adequate data on persons with disabilities and the services available to them.[213]

MEHE, MOSA, and Lebanon’s Center for Educational Research and Development (CERD) do not collect data on children with disabilities who are attending public school. None of these governmental bodies had a comprehensive list of schools that are attempting to include children with disabilities and providing reasonable accommodations.[214] MEHE could not produce a list of public schools that were wheelchair accessible. This lack of information undermines attempts to assess Lebanon’s efforts to ensure children with disabilities can access and participate fully in school.

According to the government’s statistics there are only 8,558 Lebanese children aged 5-14 registered with a disability. UNICEF, WHO, and the World Bank estimate that 15 percent of the global population has a disability.[215] Lebanon has not carried out a census since 1932, however the UN estimates the population of Lebanese citizens in Lebanon to be around 4.6 million. 17.4 percent—or 802,000—are between the ages of 5-14 (the age of compulsory education).[216] Accordingly, there could be more than 45,000 children at the compulsory education age with a disability.[217]

Human Rights Watch observed stark variation in the information that is maintained by governmental bodies. For example, according to CERD, there are 73,793 students with learning difficulties.[218] Yet according to Rights and Access’s records, only 5,277 children have ever been diagnosed with a learning disability since 1998.[219]

MOSA relies on the incentives associated with the disability card to encourage people to notify the government of their disability. However, because of a lack of awareness about the benefits—or even existence—of the card, combined with the stifling stigma attached to disability, many people do not apply for the card.[220] As a result, they do not have access to some social benefits and this contributes to the lack of comprehensive data on people with disabilities in Lebanon.

In addition to inadequate data collection, the Lebanese government does not appear to be properly maintaining records on the services that are available for persons with disabilities, including educational services. Judge Abdallah Ahmad, general director of MOSA, told Human Rights Watch that his office does not keep a record of the services being provided across the country for children with disabilities, including the services provided by MOSA.[221] Human Rights Watch also spoke with a MOSA official who was not aware of all three institutions in the district where they worked.[222] Bashar Abd Al Samad, an architect and urban planner at the Lebanese Physical Handicap Union, said “We need to have a unit that systematically manages the data and implementation.”[223] The lack of data poses a barrier in accommodating the needs of persons with disabilities.

Access to and Dissemination of Information to Parents and Communities

“MOSA didn’t give us any information.”
—Parent of child with a disability, Baalbek, February 13, 2017

International law requires Lebanon to provide adequate information to children with disabilities, their families, and caregivers about the child’s disability, each child’s unique needs, and available resources.[224] Lebanon does not appear to meet this obligation, a failure that results in discrimination. The Committee on the Rights of Person with Disabilities has stated that discrimination is, “often the result of a lack of information ... rather than a conscious will to prevent persons with disabilities from accessing places or services intended for use by the general public.”[225]

Thirty-eight of the families with a child with a disability that Human Rights Watch spoke with said that they were unaware of essential information about their child’s disability, what resources were available, and where they could find guidance or a quality education for their child.[226] This amounted to more than a third of the parents interviewed. Without adequate access to this information, parents feel they cannot support their children.

When Human Rights Watch asked a MOSA official about awareness raising strategies, the official replied, “There is no strategy for awareness.”[227] Asked what efforts were being made to provide adequate information to families, a MOSA official said there were none.[228]

The situation does not appear to have significantly improved since 2002, when the human rights group Article 19 found that a lack of access to information was a major factor in hindering access to rights—including education—for persons with disabilities.[229]

Nisreen Chamseddine, from the Lebanese Autism Society, said: “There are scarce resources for family education. They don’t find a place that really answers their questions. [Parents must] do a lot of trial and error.”[230]

Some MOSA-funded institutions haven taken on the responsibility of spreading awareness and providing information to parents on their own initiative. Six institutions told Human Rights Watch that they conduct awareness campaigns even though that is not part of their contract with MOSA. Eleven administrators said that they work with parents to educate them on their child’s disability and how to support and care for their child.

A MOSA official, who is also the mother of a child with a disability, told Human Rights Watch, “After 19 years of experience, the most important thing is parents.”[231] A public school teacher who works with children with disabilities said that “the biggest hurdle” to her work is when parents are not aware how to support and care for their child.[232]

Zara, who lives in the Chouf, told Human Rights Watch that her son Wassim, 8, was struggling academically but had received mixed information about his disability that failed to pinpoint what services he could benefit from.[233] Zara said she had “no idea of what to do for Wassim” or where she could turn for guidance.[234] She did not know of any available extra-curricular resources for him and was considering moving him to a MOSA-contracted institution.[235] Wassim told a Human Rights Watch researcher that he did not want to switch to the MOSA institution because, “the bus that picks me up says ‘Association for People with Disabilities.’”[236] Zara was desperate for information and said she was considering any option, including leaving the country.[237]

 

III. Problems with MOSA-Supported Institutions

According to Article 19, a human rights organization, “Parents of children with disabilities often have no educational alternatives [to institutions] for their children, even though the education in these institutions is of significantly lower quality [than in schools], with many children not even completing primary school.”[238]

Even if all children with a disability could access these institutions and the institutions were of a higher quality, offering only these segregated institutions to children with disabilities discriminates against them. As the United Nations expert body on disability rights simply put it, “Inclusive education is incompatible with institutionalization.”[239]

Children with disabilities should be guaranteed equality in the entire process of their education, including by having meaningful choices and opportunities to be enrolled in mainstream schools if they choose, and to receive quality education on an equal basis with, and alongside, children without disabilities.

Poor Distribution of Services in the Community

Human Rights Watch found that the distances many children had to travel in order to access an institution required children whose cases we documented to either sleep at an institution or completely precluded them from government support.

Majedah, the mother of 7-year-old Najeeb who has Down Syndrome and lives in Akkar, told Human Rights Watch that her son must travel three hours each way, every day to get to the institution he attends.[240] The ride is so long that Najeeb has to wear a diaper.[241] However, Majedah was grateful for the current bus transportation services, since the previous driver took Najeeb out of the institution early every day without notifying her, so that he could pick up more children.[242]

Marie, the mother of 13-year-old Taymor who has a physical and intellectual disability and lives in the Chouf, told Human Rights Watch that her son had a 10-hour school day at the previous institution he attended, due to four hours of travel.[243] Not only was the trip exhausting, but he would regularly come home with bruises and other injuries because, he told her, other children would beat him up because of his disability on an unsupervised bus.[244]

The mother of Amal, a 5-year-old girl with a hearing disability living in Akkar, told Human Rights Watch that travel from Akkar to her institution in Tripoli—three hours each way—exhausted Amal.[245] “She is always sleeping when she is done with school,” her mother said.[246] Even though there are 145 people identified with a hearing disability living in Akkar, there are no educational services for children with hearing disabilities in Akkar.[247]

The situation is similar in the Bekaa Valley, where one Ministry of Social Affairs (MOSA) official explained, “If [a child] has a hearing problem [and lives in Hermel] they must go back and forth from Baalbek.” The official noted, “[If] their financial situation is hard, [the parents will] just keep [the child] at home.”[248] Imad, a 4-year-old boy from Hermel who has a hearing disability, faced the choice of either sleeping in an institution in Beirut or making daily trips to Baalbek—amounting to a 10-hour school day at a cost of US$100 per month.[249] Both options were out of the question for Imad’s mother.[250] “I have three other children to take care of,” she explained. With no alternative, she said Imad will stay out of school for the foreseeable future.[251]

In many cases, as MOSA officials conceded, the cost of transportation means that many children end up sleeping at institutions, effectively separating them from their families and communities for significant amounts of time.[252]

Hadi, a 9-year-old boy with visual and intellectual disabilities from Nabatieh must sleep at his school in the Beirut suburbs and return home only on the weekends because a daily commute is neither financially nor practically feasible for his family.[253] “I’d like to go to school much closer,” Hadi told Human Rights Watch, adding he misses the love and affection he gets from his family when he is away.[254]

Judge Abdallah Ahmad, director general of MOSA since October 2016, agrees with the internationally held standard that it is best to have children with disabilities go to school near their homes and communities.[255] According to MOSA’s written response to Human Rights Watch’s questions:

“There are no governmental programs to support families of the disabled, for example financial support programs, family awareness-raising programs, social intervention programs, psychological-social support programs, and programs to provide care and support for the disabled within their families.”[256]

Nadine, a nurse and mother of two children with disabilities, said that the only resources MOSA was offering her two children with disabilities required them to live in an institution, since there was no community-based resource in the Chouf.[257] “Why pay people to keep their children in residential institutions when you don’t support us raising our children at home?” she asked.[258]

Indeed, funding community care and support for children with disabilities in other countries has been shown to be more cost-effective in the long term than funding large-scale institutions.[259]

Problematic Conditions in Residential Institutions

Numerous studies have found that living in a residential institution can be detrimental to a child’s psychological and social development.[260] According to the UN Committee on the Rights of the Child:

Institutions are also a particular setting where children with disabilities are more vulnerable to mental, physical and sexual and other forms of abuse as well as neglect and negligent treatment.[261]

Amal Bassil, director of Afel—an organization that conducts trainings on child protection policy at institutions—told Human Rights Watch that through her visits, she has learned that, “There have been a lot of children who have been abused and mistreated in the institutions.”[262] Bassil’s experience is based on conducting 200 trainings in Lebanon and having designed the current child protection protocols for MOSA.[263]

Institutional care is also typified by certain other characteristics that are harmful to children. In addition to 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.[264]

In its 2017 report on Lebanon, the UN Committee on the Rights of the Child found that there was a high rate of institutionalization of children with disabilities, inadequate care in residential care institutions, and abuse by service providers.[265]

In at least one institution people may be deprived of liberty. The staff member in charge of the institution told Human Rights Watch that no one staying there, no matter their age, is allowed to leave for any period of time without permission from the institution.[266]

Lack of privacy is another issue in Lebanese institutions for children with disabilities. The UN special rapporteur on torture has highlighted the need for children in institutions to enjoy respect for their privacy.[267] Human Rights Watch visited seven residential intuitions in Beirut, Saida, Baalbek, and Nabatieh and found that the children at those institutions regularly lack personal space, shared rooms with older residents, and were not closely monitored.

Three residential institutions had more than 10 people with disabilities sleeping in one room. At one institution, a supervisor slept in every room, but the ages of the children and unrelated adults sleeping in the same room ranged from 5 to 50 years old. Another residential institution had a supervisor in every other room, and the age of the people sleeping in a single room ranged from 8 to 30 years old. In the third residential institution, a supervisor was reportedly posted outside several rooms that were occupied by 10 boys ranging from 9 to 14 years old. These sleeping arrangements provide inadequate privacy and supervision and leave the children at risk of abuse.

Lack of Quality Education

“We cannot really say [our institution] is a school.”
—Administrator at a MOSA-funded institution, Hermel, March 15, 2017

Human Rights Watch found that due to a lack of trained staff with adequate support and insufficient monitoring, many MOSA-funded institutions did not provide a quality education. According to a 2002 report by Article 19, a human rights organization, “Lebanon’s system ... often produces under-educated adults with disability who often end up unemployed or in low-paid, insecure jobs facing dependence and isolation.”[268] The situation does not appear to have substantially improved since then.

Lack of Educational Materials, Planning, and Support

Administrators, teachers, and government officials interviewed have pointed to the lack of educational materials and planning as a significant factor in the low quality of education for children with disabilities at MOSA-funded institutions.

Under Lebanese law, the Disablity and Special Needs Education Committee is in charge of all matters related to the education of children with disabilities, including creating special units, procedures, and techniques, and setting optimal conditions to allow them to learn.[269] However, Human Rights Watch was unable to find any work that has been produced by this committee and was told by a MOSA official that it last met in 2008.[270] The result is that institutions are not prepared or equipped to educate children with disabilities, and each has to develop its own programs and mechanisms for educating children with disabilities. Consequently, the quality of education varies greatly from institution to institution.

In Akkar, Hermel, Nabatieh, and the Chouf, Human Rights Watch visited nine of the ten MOSA-funded institutions for children with disabilities in these districts, and spoke with staff and, in some cases, students there. Researchers visited additional institutions in Baalbek, Beirut, Saida, and two in Zahle.

While some classrooms appear to be equipped for learning, others appeared more like day care centers—spaces where children would spend the day, but learn little. In visits to several institutions, children were being taught math, English, Arabic, and geography. In one institution Human Rights Watch visited, however, several children’s workbooks were almost completely empty even though it was towards the end of the school year. One administrator at an institution in Beirut told Human Rights Watch that mornings were dedicated to academic subjects, yet most classrooms had children doing simple arts and crafts, such as putting beads on a string and filling plastic bottles with colored sand.

Administrators at MOSA-supported institutions countrywide told Human Rights Watch that they were unable to use the Lebanese curriculum because it was not adapted for children with disabilities. “MEHE has its own center for research, but we don’t follow their material. We use a strategy developed by our own specialist,” one administrator told Human Rights Watch.[271] Other institutions Human Rights Watch visited also created their own educational materials.

Administrators acknowledged that institutions were repeating work by creating their own materials, and could learn from each other and establish best practices rather than being left to their own devices.

According to Nisreen Chamseddine from the Lebanese Autism Society, “For each disability there cannot be a generalized curriculum.”[272] She explained that children should have tailored individualized educational programs that are adapted to each child’s specific needs. For example, there are basic adaptive international curricula for children with autism.[273] However these tailored tools and curricula are not used at MOSA institutions. The lack of appropriate education materials and individualized plans means that many institutions are not prepared to educate children with disabilities.

Lack of Monitoring System

Six administrators at institutions pointed to a lack of quality monitoring as a key reason for the poor quality of education at institutions. “MEHE never comes,” said Ismail al-Zain, the director of Al Hadi Institute, one of the few MOSA-funded institutions certified by MEHE.[274] According to every institution Human Rights Watch interviewed, MEHE does no monitoring of the MOSA-funded institutions, nor is there any interaction between MEHE and the institutions.[275] MOSA does monitor them, and has stated that it does not have the expert capacity to evaluate the quality of education for children with disabilities.[276] A MOSA official told Human Rights Watch that the institutions are not funded to provide an education, so the monitoring that they do is focused on the quality of food and other conditions such as cleanliness, since “this is what we pay for.”[277]

According to MOSA, social workers conduct monthly visits to monitor institutions.[278] However, officials at the contracted institutions gave varying reports regarding the frequency of evaluation. While the National Rehabilitation and Development Center in the Chouf told Human Rights Watch that a MOSA official visits weekly, most institutions said that the visits were monthly at best.[279] One institution administrator reported that MOSA comes once every four months and stated that “more monitoring is the most important way” to improve the quality of institutions.[280]

A MOSA supervisor of institution monitors, who used to monitor contracted institutions herself, told Human Rights Watch that monitors do not have the training to evaluate education or resources for people with disabilities. “They check the hygiene of the students and facility,” he said. “I would be lying if I said I know what [educators] are doing. [For example,] I trust that if there is a speech therapist they are doing their job.”[281]

MOSA monitors who visit institutions across the country fill out a one-page ministry form for site visits. The form, a copy of which Human Rights Watch reviewed, asked monitors to comment on baseline information, consisting mainly of questions regarding how many children are regularly attending, holidays the institution planned to take, and programmatic changes. For example, the form noted that the school would now include breadmaking as part of their vocational training.[282] Nothing in the document related to education quality or practices.[283]

With little to no oversight, especially of the quality of teaching, some children at these institutions may go for years with little, if any, learning. “The [institution] does not teach reading and writing,” a parent told Human Rights Watch. “I want Samar [a 19-year-old woman with a hearing disability] to learn something.”[284]

Additional Fees at MOSA-Supported Institutions

“There is one [institution] that required 500,000 Lira [US$330]. This is not fair. With a disability card, we are not supposed to pay at all.”
—Parent of a child with a disability, Baalbek, February 13, 2017

According to Law 220, MEHE should cover education costs for children with disabilities.[285] However, Human Rights Watch documented several cases of children attending MOSA-supported institutions who were paying fees for admission, extra assistance, and transportation ranging from $70 to $300 a month.

Staff at almost every institution Human Rights Watch visited said the institution was struggling financially. MOSA told Human Rights Watch that the contractual amount for each child, which is determined by each day of attendance, has not changed since 2012. “What’s really needed is an increase in the amount per day,” Sandra LaFoulaq, the director of Al Zawrak, a MOSA-funded institution, told Human Rights Watch.[286] Many institution staff spoke of the need to expand their capacity or provide more services for the children already attending.

According to institution administrators, MOSA is often months late in paying fees owed. To cope, staff at several institutions said that teachers either go without pay or the institution covers the bill until MOSA submits payment. A teacher at one MOSA-funded institution said that teachers at MEHE-supported public schools have significantly more financial security. The teacher lamented that the government provides stronger protections for public school teachers than “special needs educators.”[287] Such shortfalls on the part of MOSA and MEHE make it harder for institutions to run sustainable programs without charging parents.

Nine institutions Human Rights Watch visited said that they charged at least a portion of the children a fee to attend.

Talia, now 22 years old and from Hermel, has a hearing disability. In 2003, then aged 8, Talia said she was expelled from public school, and for the next six years attended a MOSA-supported institution in Zahle.[288] Her parents told Human Rights Watch that despite being on a MOSA contract, they still had to pay LBP700,000 ($466) a year to the institution for tuition.[289]

Fees for Support Services

Human Rights Watch also spoke to families in Akkar, the Chouf, and Nabatieh, that had a child attending a MOSA-supported institution, but still had to pay for additional services.

In Nabatieh, Human Rights Watch spoke with the family of Dalia, a 7-year-old girl with hearing and physical disabilities. Because no schools in her hometown will accept Dalia, she travels every Sunday to Beirut, where she sleeps at a MOSA-supported institution during the week.[290] Dalia’s mother told Human Rights Watch that Dalia needs more speech therapy than she receives there and that her family has to arrange and pay for that therapy during weekends at a cost of LBP50,000 Lebanese pounds ($33) a week.[291]

Transportation Costs

The Lebanese disability law of 2000 calls for a Committee for the Movement of Persons with Disabilities to study and pass regulations that facilitate transportation for persons with disabilities.[292] None of the parents and children whom Human Rights Watch interviewed were aware that any such support exists.

MOSA’s contracts do not account for the cost of transportation, so most families must cover that cost.[293] In some cases, this can be a significant amount, up to $300 per month. Of the 17 institutions whose staff spoke with Human Rights Watch, 16 charged transportation fees for the children who attended. Thirty families told Human Rights Watch that the cost of transportation was problematic. For some, it completely barred attendance, and others feared they would not be able to continue paying.

Amal, a 5-year-old girl living in the northern Akkar district, has a hearing disability. After receiving a cochlear implant she has regained her hearing, but needs speech therapy.[294] Her family told Human Rights Watch that there are no schools or institutions in the Akkar district—which covers 788 square kilometers—that will accept her, so she must travel back and forth to Tripoli every day to attend school, a three-hour round trip.[295] Her father told Human Rights Watch that since he is a soldier, the army helps with the cost of tuition, but that he must pay $200 a month for her daily transportation.[296] Amal’s younger sister also has a hearing disability, and their parents fear they may be unable to meet the cost of her also needing to make the trip every day when she is of school age. “Both daughters doing transportation would be very expensive, my whole salary would go to schooling,” Amal’s father told Human Rights Watch.[297]

Employees at MEHE and MOSA acknowledged that transportation fees were unaffordable for many families with children with a disability. However, MOSA officials told Human Rights Watch that there was no plan in place to remedy the problem.[298]

 

IV. International and National Legal Standards

Inclusive Education

International human rights law recognizes the right to education as universal. The Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights (ICESCR), and the Convention on the Rights of the Child (CRC), affirm the core principles of universality and nondiscrimination in the enjoyment of the right to education.[299] A 2013 report of the UN Office of the High Commissioner for Human Rights found inclusive education to be the best way to guarantee universality and nondiscrimination in the right to education, and consequently, that “the right to education is a right to inclusive education.”[300]

Nondiscrimination in Access to Education

Inclusion in education is rooted in Article 26 of the Universal Declaration of Human Rights, which provides that “everyone has the right to education.”[301] The concept of inclusive education is also contained implicitly in article 13, paragraph 1, of the ICESCR and articles 23 and 29 of the CRC.

The ICESCR, which Lebanon ratified in 1972, guarantees the right to education to all.[302] The Covenant states, “Primary education shall be compulsory and available free to all... [and] shall be made generally available and accessible to all by every appropriate means.”[303]

As a state party to the CRC, Lebanon is obligated to provide free and compulsory primary education and access to secondary education without discrimination to all children.[304] Article 23 of the convention recognizes the “special needs of a disabled child,’ and provides that:

[A]ssistance extended in accordance with paragraph 2 of the present article [granting special care and assistance to children with disabilities and their families] shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development.[305]

According to the Committee on the Rights of the Child, inclusive education should be the goal for educating children with disabilities, and state parties should introduce the necessary measures to achieve inclusive education.[306]

Lebanon is also a signatory to, but has not ratified, the Convention on the Rights of Persons with Disabilities (CRPD). This convention obligates states to ensure that persons with disabilities are not excluded from the general education system, free and compulsory primary education, or from secondary education on the basis of disability.[307] It also ensures that persons with disabilities can access an inclusive, quality, and free primary education and secondary education on an equal basis with other in their communities.[308] The convention goes further by requiring governments to provide reasonable accommodations and the “individual support required, within the general education system, to facilitate their education … consistent with the goal of full inclusion.”[309]

The CRPD guarantees the right of persons with disabilities to education and requires state parties to ensure an inclusive education system at all levels. While the CRPD provides for progressive realization, the Committee on the Rights Of Persons with Disabilities clearly states that “state parties have a specific and continuing obligation to` move as expeditiously and effectively as possible towards the full realization of [this provision].”[310] The Committee also warns the states that full realization of right to inclusive education is “not compatible with sustaining two systems of education: a mainstream education system and a special/segregated education system.”[311]

In 2000, Lebanon passed Law 220, which provide rights to persons with disabilities, including to education, “meaning ... adequate opportunities for the education and learning of all [persons with a disability], from children to adults, within all educational or learning institutions of any kind, within their regular classes and in special classes if called for.”[312] According to the law, the Ministry of Education and Higher Education is responsible for funding this education.[313]

Law 220 bans schools or learning institutions from making admissions decisions based “upon the soundness of an individual’s constitution, body, or abled-ness, or lack of handicap, infirmity, defect or other formulations.”[314]

The law further states that “any applicant with a disabled ID card” has the chance to “pursue studies in the educational or learning institution of his choice, by ensuring favorable conditions to allow him to take entrance exams and all other testing during the school year in every occupational or university stage.”[315]

Reasonable Accommodation and Accessibility

The Convention on the Rights of the Child states that all schools should be “without communicational barriers as well as physical barriers impeding the access of children with reduced mobility.”[316]

A fundamental way to address these barriers is through “reasonable accommodation.” As defined by the CRPD, reasonable accommodation means “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden … to ensure to people with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.”[317] In education, it more specifically means steps that allow students to get an equal education by “limiting as much as possible the effects of their disabilities on their performance,” with the caveat that the steps not impose “significant difficulty or expense” on the government.[318] State parties also have an obligation to ensure that the education of people with disabilities, especially those who are deaf and blind, is provided “in the most appropriate languages and modes and means of communication for the individual.”[319] The CRPD also requires that state parties promote the availability and use of assistive devices.”[320]

There is no universal standard for reasonable accommodation. Examples of reasonable accommodation include holding classes on the ground floor; providing note-takers; allowing for additional time for note-taking or during exams; priority seating for students to minimize distractions and enable them to see and hear the teachers; providing assistive devices such as magnifying equipment or tape recorders; providing sign-language instructors; reading aloud written materials for students with visual disabilities; and structural modifications to schools, such as ramps.[321]

An important part of ensuring reasonable accommodation is training teachers, school administrators, and education officials in methods to support persons with disabilities. According to the CRPD, such training should include “disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities.”[322] It is crucial that teachers are given adequate support so that they can provide accommodations to students with disabilities.

However, under Lebanese law the definition and requirements for inclusive education and reasonable accommodation are more limited. Article 37 of Lebanese Law 220 outlines that all buildings intended for public use must meet the minimum accessibility standards and that every three years, or as needed, the Ministry of Social Affairs proposes a list of buildings intended for public use and that need to be improved to ensure access by persons with disabilities, including “daycare centers, schools, educational institutes and universities.”[323] The minimal accessibility standards are set out in decree no. 7194/2011 and include a wheelchair-accessible entrance, elevators where necessary, wheelchair-accessible bathrooms, and disability parking.[324]

Article 62 of Law 220 mandates that children with a disability card receive needed accommodation in all educational assignments and examinations at all academic, technical, and university levels. This includes “assistance from other, or special techniques (braille machines, typing machines, sign language interpreter, etc.).”[325]

Quality of Education

Any meaningful effort to realize the right to education should make the quality of such education a core priority. The Committee on Economic, Social and Cultural Rights has maintained that in addition to their obligations to ensure access to education, governments must ensure that the form and substance of education, including curricula and teaching methods, are “acceptable” to students. The Committee explained that acceptability hinges on a range of different factors, including the notion that education should be of “good quality.”[326] The aim of education 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.”[327] According to the 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.”[328]

According to the UN special rapporteur on the right to education, quality education requires authorities to deploy only qualified and trained teachers in schools,” and to ensure:

[A] minimum level of student acquisition of knowledge, values, skills and competencies … adequate school infrastructure, facilities and environment … a well-qualified teaching force … and a school that is open to the participation of all, particularly students, their parents and the community.[329]

Article 63 of Law 220/2000 establishes the Disablity and Special Needs Education Committee, tasked with organizing “all matters related to the education of the disabled and those [with] special needs.”[330] Its duties include providing “advice and technical and educational assistance to all educational institutions that wish to receive special needs or disabled people,” and “considering requests for funding related to special equipment and techniques.”[331]

Affordability of Education

The CRC and the ICESCR both ensure free education. General Comments No. 9 of the CRC outlines that primary and secondary education shall be provided free of costs to children with disabilities whenever possible.[332] The Committee on the Rights of the Child has urged states to: “Set out appropriate policies and procedures to make public transportation safe [and] easily accessible to children with disabilities, and free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child.”[333]

Article 61 of Law 220 states that the costs of “special education, learning or occupational training for the disabled within specialize education and learning institutes, service centers and specialized occupational training sites” will be covered for all individuals with a disability card.[334] This includes costs for educational and social medical assistance programs.[335] The law further states that these costs will be covered until age 21.”[336]

Information

Under international law, Lebanon is obligated to conduct awareness raising campaigns and disseminate information about various disabilities and the resources available for persons with disabilities and their families.[337] Article 19 of the International Covenant on Civil and Political Rights (ICCPR), sets out a “right to information.”[338]

Lebanese Law holds the government to similar standards. Article 63.3 of Law 220/2000 states the Disability and Special Needs Education Committee shall, “provide advice and necessary guidance to special needs and disable people in all matters related to education of all stages.”[339] Article 31 of the CRPD holds similar standards for its state parties, requiring data collection and dissemination of information on persons with disabilities for the purpose of formulating and implementing effective policy.[340]

 

Acknowledgements

Human Rights Watch would like to thank the individuals who generously took the time to speak with us about their experiences for this report.

This report was researched and written by Sam Koplewicz, Satter Fellow in the Middle East and North Africa division at Human Rights Watch. Research for this report was also conducted by Emina Ćerimović, researcher in the disability rights division, and Bill Van Esveld, senior researcher in the children’s rights division.

The report was edited by Bassam Khawaja, researcher in the Middle East and North Africa division; Lama Fakih, deputy Middle East director; Kriti Sharma and Emina Ćerimović, researchers in the disability rights division; Shantha Rau Barriga, director of the disability rights division; Bill Van Esveld; Clive Baldwin, senior legal advisor; Danielle Haas, senior program editor, and Tom Porteous, deputy program director.

This report was informed by the advice and feedback of local experts and activists.

Rawan Bannoura and Manal Moufarrej provided interpretation. Malak Harb, Elie Broumana, Reem Chamseddine, Dima Mawla, Reem Kassis, Farah Abou Harb, Rassil Barada, and Maria Assi, interns in the Middle East and North Africa division, contributed to this report.

This report was prepared for publication by Rebecca Rom-Frank, photography and publications coordinator; Jose Martinez, senior coordinator; and Fitzroy Hepkins, administrative manager.

 

[1] “Children with Disabilities,” Global Partnership for Education, accessed March 7, 2018, https://www.globalpartnership.org/focus-areas/children-with-disabilities.

[2] UNESCO, “Leaving no one behind: How far on the way to universal primary and secondary education?,” July 2016, http://unesdoc.unesco.org/images/0024/002452/245238E.pdf (accessed March 7, 2018), p. 1.

[3] Letter from Hyam Fahkoury, director of Rights and Access, to Human Rights Watch, August 7, 2017.

[4] UN Department of Economic and Social Affairs, Population Division (2015). World Population Prospects: The 2015 Revision - Special Aggregates, DVD Edition; World Health Organization and World Bank, “World Report on Disability,” 2011, http://www.who.int/disabilities/world_report/2011/report.pdf (accessed October 30, 2017), p. 30.

[5] UN Children’s Fund (UNICEF), “Children and Young People with Disabilities: Fact Sheet,” May 2013, https://www.unicef. org/disabilities/files/Factsheet_A5__Web_NEW.pdf (accessed February 28, 2018), p. 20.

[6] Ibid.

[7] Ministry of Education and Higher Education (MEHE), “Achievements: 2010,” 2011, http://www.mehe.gov.lb/uploads/file/Reports/2011/Progress_Report_of_Mini...(Repaired).pdf (accessed April 1, 2016), p. 7.

[8] MEHE, “Lebanon – Education System,” undated, http://www.higher-edu.gov.lb/arabic/Guides/Other-Guides/Educ_Sys.pdf (accessed March 1, 2018), pp. 2-3.

[9] UN and Government of Lebanon, "Lebanon Crisis Response Plan 2017-2020 (2018 update)," January 2018, https://reliefweb.int/report/lebanon/lebanon-crisis-response-plan-2017-2... (accessed March 1, 2018), p. 105.

[10] Rights of Persons with Disabilities Law No. 220 of 2000.

[11] UNESCO, “Assessment of the Level of inclusiveness of Public Policies in Lebanon,” September 2013, http://www.unesco.org/new/fileadmin/MULTIMEDIA/FIELD/Beirut/images/SHS/A... (accessed September 11, 2017), p. 34; Rights of Persons with Disabilities Law No. 220 of 2000, art. 61.

[12] Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, MEHE’s Special Education Center, Beirut, March 22, 2017.

[13] Human Rights Watch interview with Marie El Hajj, Beirut, June 13, 2017.

[14] Ibid.

[15] Enabling Education Network, “Report to Norad on desk review of inclusive education policies and plans in Nepal, Tanzania, Vietnam and Zambia,” November 2007, http://www.eenet.org.uk/resources/docs/Policy_review_for_NORAD.pdf (accessed October 15, 2017), p. 9.

[16] UNESCO, “Guidelines for Inclusion: ensuring access to education for all,” 2005, http://unesdoc.unesco.org/ images/0014/001402/140224e.pdf (accessed October 15, 2017), p. 18.

[17] UNICEF, “The Right of Children with Disabilities to Education: A Rights-based Approach to Inclusive Education,” 2012, http://www.unicef.org/ceecis/IEPositionPaper_ENGLISH.pdf (accessed October 15, 2017), p.4.

[18] UNESCO, “Inclusive Education,” 2011, http://www.unesco.org/new/en/education/themes/strengthening-educationsys... Inclusion International, “Better Education for All: A Global Report,” October 2009, http:// inclusion-international.org.cluster.cwcs.co.uk/wp-content/uploads/Better-Education-for-All_GlobalReport_October-2009.pdf (accessed June 6, 2013).

[19] Save the Children, “Making Schools Inclusive,” 2008, http://www.eenet.org.uk/resources/docs/Making%20schools%20 inclusive%20SCUK.pdf (accessed February 27, 2018), p. 10.

[20] UNICEF, “Examples of inclusive education: Nepal,” 2003, http://www.unicef.org/rosa/InclusiveNep.pdf (accessed February 27, 2018), p. 1.

[21] “Integration is not Inclusion,” Alliance for Inclusive Education, accessed March 6, 2018, http://www.allfie.org.uk/pages/useful%20info/integration.html.

[22] Specialized classes within mainstream schools, such as to provide Braille training or physiotherapy, may be beneficial for students with disabilities if the special classes complement or facilitate their participation in mainstream classes or environments. UNESCO, “Guidelines for Inclusion: ensuring access to education for all,” 2005, http://unesdoc.unesco.org/images/0014/001402/140224e.pdf (accessed October 15, 2017), p. 9.

[23] Sightsavers International, “Policy Paper: Making Inclusive Education a Reality,” July 2011, p. 4.

[24] Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, art. 24.

[25] “Inclusion in Education,” UNESCO, accessed February 28, 2018, http://www.unesco.org/new/en/education/themes/ strengthening-education-systems/inclusive-education/10-questions-on-inclusive-quality-education/; UN 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 2007, http://www.un.org/en/ga/search/view_doc.asp?symbol=A/HRC/4/29 (accessed February 27, 2018), p. 7.

[26] Ibid.

[27] Human Rights Watch interview with Hyam Fahkoury, director of Rights and Access, Beirut, March 28, 2017; Article 19, “Lebanon: Disability and Access to Information,” May 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a... (accessed March 1, 2018), p. 12.

[28] Convention on the Rights of Persons with Disabilities, adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, Preamble (e).

[29] Article 19, “Lebanon: Disability and Access to Information,” May 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a...  (accessed March 1, 2018); World Health Organization and World Bank, World Report on Disability, 2011, http://www.who.int/disabilities/world_report/ 2011/report.pdf (accessed February 28, 2018), p. 27.

[30] 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, ratified by Lebanon on May 14, 199, art. 28, 1(a).

[31] Ibid., arts. 23, 3.

[32] Making Lebanon part of the 4 of the 22 members of the Arab League who have not ratified the convention. See Article 19, “Lebanon: Disability and Access to Information,” May 2015, https://www.article19.org/data/files/medialibrary/37983/ Disability-and-access-to-information-in-Lebanon,-31-May-2015,-English.pdf (accessed March 1, 2018), p. 9; CRC arts. 1(a) 28; CRPD, art. 24.

[33] Human Rights Watch interview with Hyam Fahkoury, director of Rights and Access, Beirut, March 28, 2017.

[34] Ibid.

[35] Ibid.

[36] Ibid.

[37] Article 19, “Lebanon: Disability and Access to Information,” May 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a... (accessed March 1, 2018), p. 13.

[38] Rights of Persons with Disabilities Law No. 220 of 2000.

[39] Ibid., art. 61.

[40] Ibid., art. 59.

[41] Ibid., art. 60.

[42] Ibid.

[43] Ibid., arts. 37, 59, 63, 68-82.

[44] Ibid., art. 61.

[45] Ibid.

[46] Ibid., art. 63(A)-(B).

[47] Ibid., art. 63(B).

[48] Ibid.

[49] Ibid., arts. 44, 67.

[50] Lebanese Physical Handicapped Union et al., “Submission to the Office of the High Commissioner for Human Rights on the occasion of the 9th Session of the Universal Periodic Review 2010 Lebanon,” 2010, http://lib.ohchr.org/HRBodies/UPR/Documents/Session9/LB/LPHU_LebanesePhy... (accessed September 12, 2017), pp. 4-5.

[51] UNESCO, “Social Inclusion of Young Persons with Disabilities (PWD) in Lebanon: Where do we stand and what should be done to promote their rights?” September 2013, http://unesdoc.unesco.org/images/0024/002442/244263e.pdf (accessed September 11, 2017), p. 13; Human Rights Watch interview with MOSA official, Beirut, November 27, 2017 (details withheld).

[52] Learning disabilities refer to difficulties in learning specific skills, such as reading, language, or math. They affect people's ability to either interpret what they see and hear or to link information. Children with learning disabilities may also have difficulties with paying attention and getting along with their peers. Learning disabilities are not related to intelligence or educational opportunity. An intellectual disability refers to a condition characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. Intellectual disability forms a subset within the larger universe of developmental disability, but the boundaries are often blurred as many individuals fall into both categories to differing degrees and for different reasons. Examples of intellectual disability include Down Syndrome and some forms of cerebral palsy.

[53] Human Rights Watch telephone interview with Amer Makarem, director of Youth Association for the Blind, Beirut, June 8, 2017.

[54] “Lebanese Center for Special Education (CLES) homepage,” September 5, 2017, https://www.cles.org (accessed March 3, 2018). Learning difficulties is a term used by MEHE and MOSA to describe children who are having trouble in school leading to children falling behind on the curriculum. While this delay is normally caused by a learning disability, it could also be caused by social issues at home or other factors unrelated to a disability. A MOSA official and Lebanese learning disability expert told Human Rights Watch that this term has mixed meanings and has no internationally-recognized meaning. Children diagnosed with a learning difficulty are given a temporary card rather than the more permanent disability card. Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, MEHE’s Special Education Center, Beirut, March 22, 2017; Human Rights Watch telephone interview with learning specialist at MOSA-funded Institution, March 29, 2017.

[55] Human Rights Watch interview with family, Baalbek, February 2, 2017 (details withheld).

[56] Human Rights Watch interview with family, Akkar, March 2, 2017 (details withheld).

[57] United Nations Children’s Fund (UNICEF), “Children and Young People with Disabilities: Fact Sheet,” May 2013, https://www.unicef.org/disabilities/files/Factsheet_A5__Web_NEW.pdf (accessed February 28, 2018), p. 6.

[58] Convention on the Rights of Persons with Disabilities, adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, General Comment No. 2, Accessibility, CRPD/C/GC/2.

[59] United Nations and Government of Lebanon, "Lebanon Crisis Response Plan 2017-2020 (2018 update)," January 2018, https://reliefweb.int/report/lebanon/lebanon-crisis-response-plan-2017-2020-2018-update (accessed March 1, 2018), p. 105.

[60] Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017.

[61] Rights of Persons with Disabilities Law No. 220 of 2000, art. 60(A).

[62] Human Rights Watch telephone interview with Sylvanna Lakkis, president of the Lebanese Physical Handicap Union, Beirut, July 5, 2017.

[63] Human Rights Watch interview with family, Akkar, March 2 and April 13, 2017 (details withheld).

[64] Human Rights Watch interview with family, Akkar, March 2, 2017 (details withheld).

[65] Human Rights Watch interview with Amer Makarem, Beirut, January 16, 2017.

[66] Human Rights Watch interview with Khalil Zahri, school director at Zebdine public school, Nabatieh, May 16, 2017.

[67] Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017.

[68] Human Rights Watch interview with family, Akkar, March 3, 2017 (details withheld).

[69] Ibid.

[70] Ibid.

[71] Human Rights Watch interview with family, Hermel, April 2, 2017 (details withheld).

[72] Ibid.

[73] Human Rights Watch interview with family, Beirut, April 13, 2017 (details withheld).

[74] Ibid.

[75] Ibid.

[76] Ibid.

[77] Ibid.

[78] Human Rights Watch telephone interview with Ghida Frangieh, lawyer at Legal Agenda, Beirut, July 31, 2017.

[79] Ibid.

[80] Rights of Persons with Disabilities Law No. 220 of 2000, art. 7.

[81] Human Rights Watch interview with Hyam Fahkoury, director of Rights and Access, Beirut, March 28, 2017.

[82] Rights of Persons with Disabilities Law No. 220 of 2000, art. 97.

[83] Human Rights Watch telephone interview with Ghida Frangieh, lawyer at Legal Agenda, Beirut, July 31, 2017.

[84] Human Rights Watch telephone interview with school director, May 10, 2016 (details withheld).

[85] Human Rights Watch interview with psychiatrist, Beirut, November 18, 2017 (details withheld).

[86] Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017; Human Rights Watch telephone interview with Amer Makarem, Beirut, June 8, 2017.

[87] Human Rights Watch interview with families in Baalbek, Beirut, and Chouf, February 2, April 13, and March 31, 2017 (details withheld).

[88] United Nations Educational, Scientific and Cultural Organization (UNESCO), “Assessment of the Level of Inclusiveness of Public Policies in Lebanon,” September 2013, http://www.unesco.org/new/fileadmin/MULTIMEDIA/FIELD/Beirut/images/SHS/A... (accessed March 7, 2018), p. 163.

[89] Rights of Persons with Disabilities Law No. 220 of 2000, art. 37.

[90] Ibid.

[91] Lebanese Physically Handicapped Union, "The monitoring of the accessibility of voting centers in Beirut and Mount Lebanon," February 2009.

[92] Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017.

[93] Human Rights Watch interview with Reem Bedran, architect at UNICEF, Beirut, July 21, 2017.

[94] Human Rights Watch interview with director of Mohammad Chamel public school, Beirut, May 15, 2017.

[95] Human Rights Watch telephone interview with George Khalil, director of Handicap Forum, February 28, 2017.

[96] Human Rights Watch telephone interview with Nidal Khoury, director of Arc En Ciel, February 28, 2017.

[97] Human Rights Watch interview with Ahmad Othman, director of Hrar public school, Akkar, May 17, 2017.

[98] Human Rights Watch interview with Reem Bedran, Beirut, July 21, 2017.

[99] UNESCO, “Social Inclusion of Young Persons with Disabilities (PWD) in Lebanon: Where do we stand and what should be done to promote their rights?” September 2013, http://unesdoc.unesco.org/images/0024/002442/244263e.pdf (accessed February 28, 2018), p. 14.

[100] Human Rights Watch telephone interview with Abd El Hafiz Al Saj, school principal at Blat El Meniyyeh public school, May 29, 2017.

[101] Human Rights Watch interview with municipality official, Hermel, February 15, 2017.

[102] Human Rights Watch interview with a public school teacher, Hermel, February 16, 2017.

[103] Human Rights Watch interview with the director of Baaklin public school, Chouf, May 16, 2017.

[104] Human Rights Watch interview with Khalil Zahri, school director at Zebdine public school, Nabatieh, May 16, 2017.

[105] Ibid.

[106] Human Rights Watch interview with Reem Bedran, Beirut, July 21, 2017.

[107] Ibid.

[108] Human Rights Watch interview with Amne Badreddine, architect at GIZ, Beirut, July 31, 2017.

[109] World Bank, “Education for All: The Cost of Accessibility,” August 2005, http://documents.worldbank.org/curated/en/185031468178138911/Education-f... (accessed July 29, 2011), p. 1.

[110] Human Rights Watch interview with family, Akkar, April 3, 2017 (details withheld); Human Rights Watch telephone interview with Amer Makarem, director of Youth Association for the Blind, June 8, 2017.

[111] Ibid.

[112] Human Rights Watch telephone interview with Amer Makarem, director of Youth Association for the Blind, June 8, 2017.

[113] Interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017; Human Rights Watch telephone interview with Amer Makarem, director of Youth Association for the Blind, June 8, 2017.

[114] Human Rights Watch telephone interview with Amer Makarem, director of Youth Association for the Blind, June 8, 2017.

[115] Ibid.

[116] Interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017; Human Rights Watch telephone interview with Amer Makarem, June 8, 2017.

[117] Human Rights Watch interview with family, Akkar, April 3, 2017 (details withheld).

[118] Ibid.

[119] Ibid.

[120] Ibid.

[121] Ibid.

[122] Ibid.

[123] Human Rights Watch telephone interview with Amer Makarem, June 8, 2017.

[124] Ibid.

[125] Email from Dr. Samar Ahmadieh, head of department of psycho-social services in Ministry of Education and Higher Education’s Center for Educational Research and Development (CERD), to Human Rights Watch, August 8, 2017.

[126] Human Rights Watch interview with family, Hermel, April 2, 2017 (details withheld).

[127] Ibid.

[128] Ibid.

[129] Ibid.

[130] Ibid.

[131] Ibid.

[132] Human Rights Watch interview with public school teacher, May 17, 2017 (details withheld).

[133] Human Rights Watch interview with school administrator, Hermel, February 15, 2017 (details withheld).

[134] Ibid.

[135] Human Rights Watch interview with Layal, Saida, February 1, 2017.

[136] Ibid.

[137] Ibid.

[138] Ibid.

[139] Human Rights Watch interview with Rima Allawi, director of Child First Association, Hermel, February 15, 2017.

[140] Human Rights Watch interview with director of Mohammad Chamel public school, Beirut, May 15, 2017.

[141] Human Rights Watch interview with psychiatrist, Beirut, November 18, 2017 (details withheld).

[142] Human Rights Watch interview with psychiatrist, Beirut, November 18, 2017 (details withheld).

[143] Human Rights Watch interview with family, Beirut, April 12, 2017 (details withheld).

[144] Ibid.

[145] Ibid.

[146] Human Rights Watch interview with family, Chouf, April 1, 2017 (details withheld).

[147] Ibid.

[148] Ibid.

[149] Ibid.

[150] Ibid.

[151] “Lebanese Center for Special Education (CLES) homepage,” accessed March 6, 2018, www.cles.org; United Nations and Government of Lebanon, "Lebanon Crisis Response Plan 2017-2020 (2018 update)," January 2018, https://reliefweb.int/report/lebanon/lebanon-crisis-response-plan-2017-2... (accessed March 1, 2018), p. 105.

[152] Human Rights Watch interview with teachers at Zebdine public school, Nabatieh, May 16, 2017.

[153] Ibid.

[154] Ibid.

[155] Human Rights Watch interview with Asma Azar, senior lecturer in special education at Université Saint-Joseph, Beirut, April 12, 2017.

[156] Ibid.

[157] Ibid.

[158] Ibid.

[159] UNICEF, “The Right of Children with Disabilities to Education: A Rights-based Approach to Inclusive Education,” 2012, http://www.inclusive-education.org/system/files/publications-documents/U... Children%20Disabilities_En_WebACCESS.pdf (accessed July 2, 2015), p. 10.

[160] Human Rights Watch interview with Juliette Dadah, administrator at FISTA North, Akkar, March 2, 2017; “Akkar District,” Localiban: Centre de ressources sur le developpement local au Liban, accessed March 1, 2018, http://www.localiban.org/rubrique529.html.

[161] Human Rights Watch telephone interview with Ministry of Social Affairs (MOSA) official, March 21, 2017 (details withheld); “Chouf District,” Localiban: Centre de ressources sur le developpement local au Liban, accessed March 1, 2018, http://www.localiban.org/rubrique574.html.

[162] Human Rights Watch telephone interview with MOSA official, March 21, 2017 (details withheld).

[163] Human Rights Watch interview with Dr. Weam Abou Hamdan, director of the National Rehabilitation and Development Center, Chouf, March 17, 2017.

[164] “Hermel District,” Localiban: Centre de ressources sur le developpement local au Liban, accessed March 1, 2018, http://www.localiban.org/rubrique535.html.

[165] Human Rights Watch telephone interview with MOSA official, March 21, 2017 (details withheld).

[166] Ibid.

[167] Human Rights Watch interview with family, Hermel, April 2, 2017.

[168] Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, art. 2.

[169] Present from early childhood, autism is a developmental disability characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. Human Rights Watch interview with family, Chouf, March 17, 2017 (details withheld).

[170] Human Rights Watch interview with family, Chouf, March 17, 2017 (details withheld).

[171] Ibid.

[172] CRPD, adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon, June 14, 2007, art. 24.

[173] Rights of Persons with Disabilities Law No. 220 of 2000, art. 60.

[174] Human Rights Watch interview with family, Beirut, April 13, 2017 (details withheld).

[175] Ibid.

[176] Ibid.

[177] Ibid.

[178] Ibid.

[179] Ibid.

[180] Ibid.

[181] Ibid.

[182] Human Rights Watch telephone interview with Nisreen Chamseddine, education coordinator at Lebanese Autism Society, April 7, 2017.

[183] Human Rights Watch interview with Leyla Raouda, school director of Heritage College, Beirut, January 9, 2017.

[184] Human Rights Watch interview with family, Akkar, April 1, 2017.

[185] Ibid.

[186] Ibid.

[187] Ibid.

[188] Human Rights Watch interview with family, Akkar, March 2, 2017.

[189] Ibid.

[190] Ibid.

[191] Ibid.

[192] Ibid.

[193] Ibid.

[194] Human Rights Watch telephone interview with Nisreen Chamseddine, April 7, 2017.

[195] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006); Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, art. 26.

[196] Human Rights Watch interview with family, Nabatieh, March 23, 2017 (details withheld).

[197] Ibid.

[198] Ibid.

[199] Human Rights Watch interview with Juliette Dahdah, Akkar, March 2, 2017.

[200] Human Rights Watch interview with Bassil Mansour, director of Tamkeen Association, Nabatieh, March 14, 2017; Human Rights Watch interview with Dr. Weam Abou Hamdan, director of the National Rehabilitation and Development Center, Chouf, March 17, 2017.

[201] Human Rights Watch interview with Bassil Mansour, Nabatieh, March 14, 2017.

[202] Human Rights Watch telephone interview with Dr. Moussa Charafeddine, director of Friends of the Disabled, March 24, 2017.

[203] Ibid.

[204] Ibid.

[205] Human Rights Watch interview with Dr. Weam Abou Hamdan, Chouf, March 17, 2017.

[206] Human Rights Watch interview with family, Akkar, March 3, 2017 (details withheld).

[207] Ibid.

[208] Ibid.

[209] Human Rights Watch interview with Bassil Mansour, director of the Tamkeen Association, Nabatieh, March 14, 2017; Human Rights Watch telephone interview with Dr. Moussa Charafeddine, director of Friends of the Disabled, March 24, 2017.

[210] UNICEF, “Promoting the Rights of Children with Disabilities,” 2007, http://www.un.org/esa/socdev/unyin/documents/children_disability_rights.pdf (accessed January 2, 2018), p. 4.

[211] CRPD, adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, art. 31.

[212] UN Committee on the Rights of the Child, “Concluding observations on the combined fourth and fifth periodic report of Lebanon,” CRC/C/ATG/CO/2-4, June 22, 2017, http://www.un.org/en/ga/search/view_doc.asp?symbol=CRC/C/ATG/CO/2-4 (accessed March 1, 2018), para. 13.

[213] Article 19, “Lebanon: Disability and Access to Information,” May 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a... (accessed March 1, 2018), p. 4.

[214] Letter from Hyam Fahkoury, director of Rights and Access, to Human Rights Watch, August 7, 2017.

[215] UNESCO, “Social Inclusion of Young Persons with Disabilities (PWD) in Lebanon: Where do we stand and what should be done to promote their rights?,” September 2013, http://unesdoc.unesco.org/images/0024/002442/244263e.pdf (accessed March 1, 2018), p. 9.

[216] United Nations, Department of Economic and Social Affairs, Population Division (2015). World Population Prospects: The 2015 Revision - Special Aggregates, DVD Edition; World Health Organization and World Bank, “World Report on Disability,” 2011, http://www.who.int/disabilities/world_report/2011/report.pdf (accessed March 1, 2018).

[217] Ibid.

[218] Email from Dr. Samar Ahmadieh, head of department of psycho-social services in CERD, to Human Rights Watch, August 8, 2017.

[219] Letter from Hyam Fahkoury, director of Rights and Access, to Human Rights Watch, August 7, 2017.

[220] UNESCO, “Assessment of the Level of inclusiveness of Public Policies in Lebanon,” September 2013, http://www.unesco.org/new/fileadmin/MULTIMEDIA/FIELD/Beirut/images/SHS/A... (accessed March 1, 2018); UNESCO, “Social Inclusion of Young Persons with Disabilities (PWD) in Lebanon: Where do we stand and what should be done to promote their rights?” September 2013, http://unesdoc.unesco.org/images/0024/002442/244263e.pdf (accessed September 11, 2017), pp. 10-11.

[221] Human Rights Watch interview with Judge Abdallah Ahmad, MOSA Director General, Beirut, March 7, 2017.

[222] Human Rights Watch telephone interview with MOSA official, March 21, 2017 (details withheld).

[223] Human Rights Watch interview with Bashar Abd Al Samad, an architect and urban planner at the Lebanese Physical Handicap Union, Beirut, July 21, 2017.

[224] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006).

[225] Convention on the Rights of Persons with Disabilities, adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, General Comment No. 2, Accessibility, CRPD/C/GC/2.

[226] Human Rights Watch interviews with families in Lebanon, January 31 to June 15, 2017.

[227] Human Rights Watch interview with municipality official, Akkar, March 2, 2017 (details withheld).

[228] Human Rights Watch interview with Marie El Hajj, Beirut, June 13, 2017.

[229] Article 19, “Lebanon: Disability and Access to Information,” May, 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a... (accessed March 1, 2018), p. 14.

[230] Human Rights Watch telephone interview with Nisreen Chamseddine, April 7, 2017.

[231] Human Rights Watch interview with family, Akkar, March 3, 2017 (details withheld).

[232] Human Rights Watch interview with Ahmad Othman, director of Hrar public school, Akkar, May 17, 2017.

[233] Human Rights Watch interview with family, Chouf, January 4, 2017 (details withheld).

[234] Ibid.

[235] Ibid.

[236] Ibid.

[237] Ibid.

[238] Article 19, “Lebanon: Disability and Access to Information,” May, 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a... (accessed March 1, 2018), p.14.

[239] United Nations Committee on the Rights of Persons with Disabilities, General Comment No. 4, The Right to Inclusive Education, UN Doc. CRPD/C/GC/4 (2016).

[240] Human Rights Watch interview with family, Akkar, March 2, 2017 (details withheld).

[241] Ibid.

[242] Ibid.

[243] Human Rights Watch interview with family, Chouf, March 31, 2017 (details withheld).

[244] Ibid.

[245] Human Rights Watch interview with family, Akkar, March 1, 2017 (details withheld).

[246] Ibid.

[247] Letter from Hyam Fahkoury, director of Rights and Access, to Human Rights Watch, August 7, 2017.

[248] Human Rights Watch interview with Ministry of Social Affairs (MOSA) official, Hermel, February 15, 2017 (details withheld).

[249] Human Rights Watch interview with family, Hermel, April 2, 2017 (details withheld).

[250] Ibid.

[251] Ibid.

[252] Human Rights Watch interview with Marie El Hajj, Beirut, August 8, 2017.

[253] Human Rights Watch interview with family, Nabatieh, March 14, 2017 (details withheld).

[254] Human Rights Watch interview with Hadi, Nabatieh, March 14, 2017 (details withheld).

[255] Human Rights Watch interview with Judge Abdallah Ahmad, MOSA director general, Beirut, March 7, 2017.

[256] Letter from Marie El Hajj, MOSA official, to Human Rights Watch, July 7, 2017.

[257] Human Rights Watch interview with family, Chouf, March 31, 2017 (details withheld).

[258] Ibid.

[259] World Health Organization and the Gulbenkian Global Mental Health Platform, “Promoting rights and community living for children with psychosocial disabilities,” 2015, http://apps.who.int/iris/bitstream/10665/184033/1/9789241565004 _eng.pdf (accessed March 1, 2018), p. 17.

[260] See, for example, EveryChild, “A study of institutional childcare in Central and Eastern Europe and the Former Soviet Union,” 2005, https://bettercarenetwork.org/sites/default/files/Family%20Matters%20-%2... Institutional%20Childcare%20in%20Central%20and%20Eastern%20Europe%20and%20the%20former%20Soviet%20Union.pdf (accessed March 6, 2018); Better Care Network and Save the Children UK, “The Risk of Harm to young Children in Institutional Care,” 2009, https://www.crin.org/en/docs/The_Risk_of_Harm.pdf (accessed March 8, 2018); EveryChild and Better Care Network, “Enabling Reform: Why supporting children with disabilities must be at the heart of successful child care reform,” March 2012, https://bettercarenetwork.org/sites/default/files/Enabling%20Reform%20-%... Supporting%20Children%20with%20Disabilities%20Must%20Be%20at%20the%20Heart%20of%20Successful%20Child%20Care%20Reform_0.pdf (accessed March 8, 2018); Alexandra L. Trout et al., “Overlooked: Children with disabilities in residential care,” Child Welfare, vol. 88.2 (2010).

[261] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006), para. 47.

[262] Human Rights Watch telephone interview with Amal Bassil, director of Afel, August 8, 2017.

[263] Ibid.

[264] World Health Organization and the Gulbenkian Global Mental Health Platform, “Promoting rights and community living for children with psychosocial disabilities,” 2015, http://apps.who.int/iris/bitstream/10665/184033/1/9789241565004_eng.pdf (accessed March 1, 2018), p. 16; Marinus H. van Ijzendoorn et al., “Children in Institutional Care: Delayed Development and Resilience,” Monographs of the Society for Research in Child Development, vol. 76.4 (2001); Megan M. Julian and Robert B. McCall, “The Development of Children within Alternative Residential Care Environments,” International Journal of Child & Family Welfare, vol. 3.4 (2011).

[265] UN Committee on the Rights of the Child, “Concluding observations on the combined fourth and fifth periodic report of Lebanon,” CRC/C/ATG/CO/2-4, June 22, 2017.

[266] Human Rights Watch interview with staff at Imdad, Baalbek, February 13, 2017.

[267] UN Commission on Human Rights, 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, http://www.ohchr.org/EN/HRBodies/HRC/ RegularSessions/Session28/Documents/A_HRC_28_68_E.doc (accessed March 1, 2018), p. 21.

[268] Article 19, “Lebanon: Disability and Access to Information,” May 2015, https://www.article19.org/data/files/medialibrary/37983/Disability-and-a... (accessed March 1, 2018), p. 14.

[269] Rights of Persons with Disabilities Law No. 220 of 2000, art. 63.

[270] Human Rights Watch interview with MOSA official, Beirut, June 13, 2017 (details withheld).

[271] Human Rights Watch interview with Juliette Dahdah, Akkar, March 2, 2017.

[272] Human Rights Watch telephone interview with Nisreen Chamseddine, April 7, 2017.

[273] Ibid.

[274] Human Rights Watch interview with Ismail al-Zain, Beirut, January 31, 2017.

[275] Human Rights Watch interview with Rita Gahreeb and Mayssa Itani, Beirut, March 22, 2017.

[276] Human Rights Watch interview with Marie El Hajj, Beirut, June 13, 2017.

[277] Human Rights Watch interview with municipality official, Hermel, February 15, 2017.

[278] Letter from Marie El Hajj to Human Rights Watch, July 7, 2017.

[279] Human Rights Watch interview with Dr. Weam Abou Hamdan, Chouf, March 17, 2017.

[280] Human Rights Watch interview with Myriam Kassarji, director of Arc En Ciel school, Zahle, February 2, 2017.

[281] Human Rights Watch interview with MOSA official, Baalbek, February 17, 2017 (details withheld).

[282] “MOSA assessment letter,” reviewed during a Human Rights Watch interview with a MOSA-funded administrator, Beirut, February 14, 2017.

[283] Ibid.

[284] Human Rights Watch interview with family, Hermel, February 15, 2017 (details withheld).

[285] Rights of Persons with Disabilities Law No. 220 of 2000, art. 61.

[286] Human Rights Watch interview with Sandra LaFoulaq, director of Al Zawrak, February 2, 2017.

[287] Human Rights Watch interview with teacher, Saida, February 1, 2017 (details withheld).

[288] Ibid.

[289] Ibid.

[290] Human Rights Watch interview with family, Nabatieh, March 15, 2017 (details withheld).

[291] Ibid.

[292] Rights of Persons with Disabilities Law No. 220 of 2000, art. 44.

[293] Human Rights Watch interview with Marie El Hajj, Beirut, June 13, 2017.

[294] Human Rights Watch interview with family, Akkar, March 1, 2017 (details withheld).

[295] Ibid.

[296] Ibid.

[297] Ibid.

[298] Human Rights Watch interview with Marie El Hajj, Beirut, June 13, 2017.

[299] See United Nations Committee on the Rights of Persons with Disabilities, “Concluding observations on the initial report of Argentina as approved by the Committee at its eighth session (17–28 September 2012),” CRPD/C/ARG/CO/1, October 8, 2012, http://www.un.org/en/ga/search/view_doc.asp?symbol=CRPD/C/ARG/CO/1 (accessed March 1, 2018); UN Committee on the Rights of Persons with Disabilities, “Consideration of reports submitted by States parties under article 35 of the Convention,” CRPD/C/ESP/CO/1, October 19, 2011, http://www.un.org/en/ga/search/view_doc.asp?symbol= CRPD/C/ESP/CO/1 (accessed March 1, 2018).

[300] Office of the UN High Commissioner for Human Rights (UNHCR), “Thematic Study on the Right of Persons with Disabilities to Education,” A/HRC/25/29, December 18, 2013, http://www.ohchr.org/Documents/Issues/Disability/StudyEducation /A_HRC_25_29_ENG.doc (accessed March 1, 2018).

[301] Universal Declaration of Human Rights, adopted December 10, 1948, G.A. Res. 217A(III), UN Doc. A/810 at 71 (1948), art. 26. Several treaties and normative instruments have reaffirmed this right. The UN Educational, Scientific and Cultural Organization (UNESCO) Convention against Discrimination in Education (CADE), adopted on December 14, 1960, 429 U.N.T.S. 93 (1962), stipulates that States have the obligation to expand educational opportunities for all who remain deprived of primary education. The International Covenant on Economic, Social and Cultural Rights (ICESCR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 UN GAOR Supp. (No. 16) at 49, UN Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force January 3, 1976, reaffirms the right to education for all and highlights the principle of free compulsory education. Finally, the 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, the most widely ratified human rights treaty, spells out the right of children not to be discriminated against. UNESCO, “Inclusive Education,” 2011, http://www.unesco.org /new/en/education/themes/strengthening-educationsystems/inclusive-education/ (accessed October 10, 2017).

[302] ICESCR, adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 UN GAOR Supp. (No. 16) at 49, UN Doc. A/6316 (1966), 993 U.N.T.S. 3, entered into force January 3, 1976, ratified by Lebanon on November 3, 1972, art. 13.

[303] Ibid., art. 13.

[304] 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, ratified by Lebanon on May 14, 1991, art. 18 (1).

[305] Ibid., art. 23.

[306] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006), para. 66.

[307] Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, art. 24.

[308] Ibid., art. 24.

[309] Ibid.

[310] UN Committee on the Rights of Persons with Disabilities, General Comment No. 4, The Right to Inclusive Education, UN Doc. CRPD/C/GC/4 (2016), para. 39.

[311] Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, entered into force May 3, 2008, signed by Lebanon June 14, 2007, art. 24.

[312] Rights of Persons with Disabilities Law No. 220 of 2000, art. 59.

[313] Ibid., art. 61.

[314] Ibid., art. 60.

[315] Ibid.

[316] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006), para. 65.

[317] CRPD, art. 2.

[318] University of Iowa, “Assisting Students with Disabilities: A Guide for Instructors,” accessed March 1, 2018, https://diversity.uiowa.edu/policies/assisting-students-disabilities-gui....

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

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

[321] “Assisting Students with Disabilities: A Guide for Instructors,” University of Iowa, accessed March 7, 2018, https://diversity.uiowa.edu/policies/assisting-students-disabilities-gui... Roger H. Martin, “ABC’s of Accommodations,” New York Times, October 30, 2012, http://www.nytimes.com/2012/11/04/education/edlife/guide-to-accommodatio... (accessed March 1, 2018); “What is Reasonable Accommodation in relation to examinations run by the State Examinations Commission?,” Special Education Support Service, accessed March 1, 2018, https://www.sess.ie/faq/what-reasonable-accommodation-relation-examinati... UN Committee on the Rights of Persons with Disabilities, General Comment No. 4, The Right to Inclusive Education, UN Doc. CRPD/C/GC/4 (2016).

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

[323] Rights of Persons with Disabilities Law No. 220 of 2000, art. 37.

[324] Human Rights Watch telephone interview with Sylvanna Lakkis, July 5, 2017.

[325] Rights of Persons with Disabilities Law No. 220 of 2000, art. 62.

[326] UN Committee on Economic, Social and Cultural Rights, General Comment No. 13, The Right to Education, E/C.12/1999/10 (1999), para. 6(c).

[327] UN Committee on the Rights of the Child, General Comment No. 1, The Aims of Education, CRC/GC/2001/1 (2001), para. 9.

[328] Ibid., para. 22.

[329] UN Human Rights Council, Report of the Special Rapporteur on the right to education, Kishore Singh, Normative action for quality education, A/HRC/20/21, May 2, 2012, https://digitallibrary.un.org/record/726628?ln=en (accessed March 1, 2018), para. 21; “Quality education,” Right to Education, accessed March 1, 2018, http://www.right-to-education.org/issue-page/education-quality.

[330] Rights of Persons with Disabilities Law No. 220 of 2000, art. 63.

[331] Ibid.

[332] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006), para. 65.

[333] Ibid., para. 39; CRC, art. 23(3).

[334] Rights of Persons with Disabilities Law No. 220 of 2000, art. 61.

[335] Ibid.

[336] Ibid.

[337] UN Committee on the Rights of the Child, General Comment No. 9, The Rights of Children with Disabilities, UN Doc. CRC/C/GC/9/Corr.1, (2006), para. 41.

[338] International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 UN GAOR Supp. (No. 16) at 52, UN Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force March 23, 1976, ratified by Lebanon November 3, 1972, art. 19.

[339] Rights of Persons with Disabilities Law No. 220 of 2000, art. 63.

[340] CRPD, art. 31.

Posted: January 1, 1970, 12:00 am

Lebanon’s public education system discriminates against children with disabilities. Children with disabilities are often denied admission to schools because of their disability. And for those who manage to enroll, most schools do not take reasonable steps to provide them with a quality education. Instead, many children with disabilities in Lebanon attend institutions, which are not mandated to provide an education, or receive no education at all.

Although Lebanese law bars schools from discriminating against children with disabilities, public and private schools exclude many children with disabilities. For those allowed to enroll, schools often lack reasonable accommodations, such as modifications to the classroom environment and curricula, or teaching methods to address children’s needs. Schools also require the families of children with disabilities to pay extra fees and expenses that in effect are discriminatory.

Posted: January 1, 1970, 12:00 am