(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.”