RFE/RL – Radio Free Europe/Radio Liberty (Author)
Kazakhstan's state-run centers for children with special needs are being described by activists as "the place no one would have stayed" if they had a choice.
Some 1,700 children with mental disabilities who live at such facilities in Kazakhstan have only limited contact with the outside world.
Kazakh activist and attorney Aigul Shakibaeva told RFE/RL after visiting several of the state-run facilities that children are being dehumanized by horrific living conditions.
"Instead of their own names, children have numbers on their beds and clothes," said Shakibaeva, a lawyer for the nonprofit Commission To Defend the Rights of People With Special Needs.
"It feels like a concentration camp, where you take away a person's identity and reduce them to mere numbers," Shakibaeva said.
She says the children she saw at the facilities have almost nothing of their own and must share everything, "including even their underwear."
Shakibaeva was a member of a group that visited about 20 facilities for people with special needs during 2019 as part of a project organized by the Nur-Sultan office of the Organization for Security and Cooperation in Europe (OSCE) and the Ombudsman for Human Rights in Kazakhstan.
"The moment you enter the wards for children with mental disabilities in any Kazakh province, you see a scary situation," she says. "Children are medicated with psychotropic drugs. Their tongues are sticking out and their eyes are out of focus."
Shakibaeva's description of the facilities is echoed by researchers from Human Rights Watch.
Kazakh authorities, meanwhile, insist that the government takes the issue of well-being and protection of the children in such institutions seriously.
The Labor and Social Protection Ministry told RFE/RL on June 18 that the government has taken concrete measures in recent years to raise the quality of medical and social care in facilities for the disabled, has hired qualified staff, and raised the wages of social workers.
In Kazakhstan, many children born with disabilities come face-to-face with rejection very early in their lives.
Parents often decide to abandon babies with disabilities before leaving hospital maternity wards, signing away their parental rights when they discover their newborn is disabled.
In fact, there is a high demand to adopt healthy babies in Kazakhstan. But children with special needs rarely are adopted.
From maternity wards, such newborns are transferred to the so-called Baby Houses -- state-run orphanages for children up to the age of four. Then, at the age of four, they are moved again to centers for people with special needs.
Many doctors and parents in Kazakhstan say that the prospect of raising a disabled child scares families and strains many marriages.
Recalling her own experience, Shakibaeva said she faced a difficult choice when she gave birth to a boy with Down Syndrome 10 years ago.
Shakibaeva chose to take her baby home. But it cost the young mother her marriage.
Unhappy with her decision to raise the child, Shakibaeva's husband left her within months.
Shakibaeva raises her son alone while championing the rights of thousands of others who've been left at the mercy of state institutions.
She urges the state and society to provide more support for parents so they don't give up on children with special needs.
"In Kazakhstan, when a baby is born with disabilities, no one tells the mother, 'Wait, don't give up, let us help you,'" Shakibaeva said.
Asked by RFE/RL, Yerlan Aukenov, deputy minister for labor and social protection, said that in recent years 72 specialized day-care centers have been created for children with disabilities.
Based on their needs, the children receive treatment from psychiatrists, speech therapists, physiotherapists, and other specialists during the day, while returning to their homes at night.
The official also said that, since January 1, the government has helped 1,020 parents with disabled children to find employment.
All Kazakh provinces have at least one specialized facility for children with disabilities. But many are located in remote areas that are far from the regional capitals.
In East Kazakhstan Province, the specialized orphanage is in the small town of Ayagoz.
It takes 12 hours to travel there by train from the provincial capital, Oskemen.
Taxi drivers are reluctant to drive to Ayagoz, citing bad roads.
In Aqmala Province, the facility is located in the far-away village of Kupchanovka.
However, that facility has meeting rooms where visitors can stay overnight if necessary.
Many other special-needs centers don't allow visitors to stay overnight. Some limit meetings with resident children to as little as two hours.
Many orphanages have a nice exterior with neatly organized reception rooms decorated with colorful balloons and pictures.
But, according to Shakibaeva, in most cases it's just a deceptive facade that hides a grim and painful reality inside.
"In one facility, we were shown a music-therapy office -- wow, very chic, balloons everywhere, music is playing quietly, how cool is that," she said. "But we soon found out that the children who live in the orphanage are not allowed to enter the music room. The room was mainly used for therapy classes for children coming from various rehabilitation centers."
Same Problem, Different Approach
Shakibaeva said children who've been labelled as "aggressive" by the orphanages aren't allowed to leave their rooms, except during mealtimes when they go to common dining rooms.
In some facilities, she says, caregivers tie the children's hands -- arguing that the restraints are necessary to prevent them from harming themselves.
To justify such measures, some orphanage officials say the children beat and scratch themselves if their hands are not tied.
Others try to find a solution that protects the children but allows them to feel comfortable.
At the orphanage in the town of Talgar, children who harm themselves are given shirts with mittens attached to the end of the sleeves -- a simple solution that ended the painful practice of binding the children's hands.
In one facility, officials said some children remain bedridden inside their rooms at all times because they are too ill to go out.
In another orphanage, the administration came up with the idea of attaching special wheels to beds and regularly taking such children to a garden outside.
Shakibaeva said records from at least six facilities reveal that they give psychotropic drugs to children with "aggressive" behavior in an attempt to calm them down.
Shakibaeva says those orphanages should try alternative, harmless methods instead. She says caregivers must first try to understand the cause of a child's alleged aggression.
"As these children can't speak, they can't say what's bothering them," Shakibaeva explained. "Maybe they have a toothache. The children get aggressive because they can't explain their problem and others don't understand them. Psychotropic drugs aren't a solution."
In most cases, Shakibaeva argued, the use of psychotropic drugs further hampers a child's development.
Children with mental disabilities in orphanages also are more vulnerable to mistreatment and cruelty, she added.
Human Rights Watch (HRW) has reported that some staff at Kazakhstan's orphanages admit that they give psychotropic drugs to children in order to sedate them.
Such drugs are usually medically prescribed to treat schizophrenia, sleep disorders, and strong pain. The sedatives put children to sleep, in some cases for up to 24 hours, HRW said in a 2019 report.
Employees also confirmed to HRW that they have sent children to psychiatric hospitals for behavior such as screaming, shouting, or refusing to follow staff directions.
HRW also said that the children in such facilities "can face neglect and violence and are isolated from families and society."
Several young adults who grew up in institutions told HRW that staff beat them with crutches and mops or had slammed them or other children against walls.
Staff would also force children to work -- for example, mopping floors, or feeding, bathing, and changing the diapers of younger children.
They can't speak, they can't complain, and "if they're mistreated, they wouldn't even understand that it's wrong," Shakibaeva said.
Asked by RFE/RL about the treatment of the children, Aukenov said his ministry and its regional departments regularly conduct inspections -- both scheduled and unannounced -- to ensure the quality of services, treatment, and care at the facilities for the disabled including the specialized centers for children with special needs.
The deputy minister said about 2,500 such inspections have taken place over the past 4 1/2 years.
According to the official, the inspectors have reported violations -- mainly, noncompliance with social, medical, sanitary, and epidemiological standards -- in dozens of entities. He said the facilities were fined for failing to meet the standards.
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