When Anastasia Daunis of Moscow gave birth in 1999 to Dasha, a baby with Down syndrome, she says her doctors delivered a bleak prognosis.
"They said, 'Usually, kids like that never develop. They are just like vegetables in the garden," Daunis, who is in her early 30s, recalls. "They told me she would die in my arms, that her illness was so severe that she would need constant care. They compared her to a broken toy that you can return to the store."
Daunis said she was convinced that she would never be able to provide Dasha with the proper care she needed.
"And Dasha was left in the hospital," Daunis sighs.
Lyudmila Kirillova, 38, lives in Mytishi, a Moscow suburb. She says that when her daughter Nika was born in 2006, she felt "wonderful."
"And then we were told she had a chromosomal abnormality," says Kirillova, referring to Down syndrome. "They implied that in the best-case scenario, she would be able to say 'mama' by the time she was 36."
A new report by the New York-based watchdog Human Rights Watch (HRW) chronicles the experiences of Daunis and Kirillova and many mothers like her.
The HRW report finds that nearly 30 percent of all Russian children with disabilities are removed from their parents and live in state orphanages, where they face neglect and sometimes violence. The rights watchdog also says doctors and staff often discourage familial contact once the children are institutionalized, saying the kids become "spoiled" by such attention.
'Defective' Children
The author of the report, Andrea Mazzarino, a Europe and Central Asia researcher at HRW, says that parents of disabled children born in Russia are often convinced by doctors that their children are "defective," lack developmental potential, or that they don't have the means to take care of them.
"In Russia, when a child is born with a disability," Mazzarino says, "parents face pressure from doctors to give their children up. Children end up in orphanages, where they may face serious abuse and neglect."
HRW's 93-page report, titled "Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages," finds that the institutionalization of these children and their ill treatment inside the Russian system threatens their well-being and impedes their development.
While it recognizes some progress by the Russian government, including the development of the National Action Strategy on the Rights of Children for 2012-17, HRW says much more needs to be done.
The report recommends that Moscow reduce the number of children in state institutions, develop a long-term plan to end the institutionalization of children with disabilities, and adopt zero tolerance for abuse. It also urges Russia to make sure that workers in orphanages respect the rights and dignity of children with disabilities. Many of these workers, HRW says, want to help the children but lack proper training and support.
Confined To Cribs
HRW researchers interviewed 200 children, family members, advocates, and orphanage staff and visited 10 state orphanages where children with disabilities live.
HRW found that in eight out of the 10 orphanages, many children -- of all ages -- were confined in cribs for 24 hours a day, seven days a week, in so-called "lying-down" rooms. Orphanage staff justified the treatment of the children -- diagnosed with a variety of conditions, from cerebral palsy to Down syndrome to schizophrenia -- by saying the children were contagious, that their health was too fragile, or that "the children did not understand anything and therefore could not benefit from going outside or to classes."
"Violence and neglect of children with disabilities in orphanages is heartbreaking and completely deplorable," Mazzarino says.
Some children interviewed by HRW said that they had been beaten by orphanage staff, injected with sedatives, and sent to psychiatric hospitals if they misbehaved.
"A 'cokladnaya' is a report they write up when someone misbehaves," Marat T, 24, who grew up in a Russian orphanage in the Pskov region, told HRW. "They write it up and then they give it to the doctor. Once these start to pile up, they send you to the psychiatric clinic."
Nastia Y., 19, who has a developmental disability, also lived in a Russian orphanage in the Pskov region from 1998 to 2011.
"When they were sober, they were fine," she says, "but when they got drunk, they used to beat me, drag me by the hair."
She says other girls in the orphanage used to hit and kick her while staff members looks on. She says she was also given pills to calm her down.
HRW says that it also documented at least three cases in which children who had learned to walk or had the ability to walk were bound to their cribs or wheelchairs with rags. In a specialized infant-care facility in Moscow, HRW says one staff member had immobilized a 4-year-old girl in a wheelchair -- using rags tied around her head and torso -- even though she could walk. The staff member explained that the girl was "blind and she was hitting her head on the edges of furniture."
Benefits Of Being At Home
"The vast majority of children living in Russian orphanages have at least one living parent," HRW's Mazzarino says. "These children are not orphans. They could be living with their families. The sooner that children are transferred out of institutions, the better chance they have of developing normally."
Mazzarino says children with disabilities who grown up in biological or foster families often thrive because they are given love, attention, and proper education.
Just ask Anastasia Daunis.
"We saw Dasha making progress, even in the orphanage environment," says Daunis, the mother of Dasha, who is now 14. "We started to imagine what it could have been like if she were growing up at home -- how much progress she could have made."
Both Daunis and Lyudmila Kirillova eventually brought their children home.
Daunis regained custody of Dasha shortly after her first birthday. Kirillova brought Nika home at 16 months of age.
"Dasha really likes being a caretaker," Daunis says. "Her favorite patients are grandmothers and kids. She does it without squeamishness, with all of her heart. With her, there is always something to be happy about."
As for Nika, who's now 8, Kirillova says she is learning how to read and count.
"Counting is harder," she says, "but we're working on it. I have hopes for her."
