After several temporary shelter stays, Berkova now lives in a nursing home in Dnipro with hundreds of other people with disabilities.
She is one of thousands of displaced Ukrainians with disabilities, many of them senior citizens, who have been institutionalized since the start of Russia’s invasion and who are experiencing some of the war’s most shattering consequences. At least 4,000 elderly Ukrainians with disabilities have been forced into state institutions, according to an Amnesty International report.
Many of these institutions were built in the Soviet era, when the prevailing attitude was to segregate and hide disabled people from the rest of society. They are often located in remote areas, provide minimal comforts and allow almost no freedom or independence for residents who cannot move or interact with others without assistance.
Before the invasion, Ukraine had started to reform its social services to promote independent living for people with disabilities, but that effort stalled when Russian tanks rolled in a year ago. With millions of Ukrainians displaced, the upheaval has thrown the country back to relying on a bleak network of overwhelmed, understaffed institutions where some residents may go weeks without leaving their beds.
Halyna Dmitrieva, 51, has cerebral palsy and has been living in a nursing home outside the city of Uman since July. The nurses tell her she is too big for them to lift, Dmitrieva said in a phone interview, but on some days a cleaner or other staff will help lift her into her wheelchair. On days when nobody can help her, she uses a bed pan and relies on her 86-year-old aunt to roll her back and forth to prevent bed sores.
“I cannot do anything but stay in bed,” Dmitrieva said.
In January, she went 12 days without getting up. “I used to go outside twice a day,” she said of her prewar life in the eastern city of Kramatorsk, which included an apartment adapted to her needs, walks in a park and weekly karaoke at a city rehabilitation center. Now, with her official residency transferred to the nursing home, Dmitrieva does not know if she will ever regain that fingerhold on self-reliance even if fighting stops.
“I don’t feel free,” she said.
The National Assembly of People with Disabilities in Ukraine, an advocacy group, said in a report that many care facilities in Ukraine do not have sufficient staffing.
Many institutions were short of resources before the invasion, in part because it is difficult to recruit staff to work in remote locations where pay is lower, according to Marharyta Tarasova, who works with a watchdog program called the National Preventive Mechanism.
A lack of staff often means basic care is inadequate and there are few activities. In its 2020 report, the National Prevention Mechanism, found that 99 percent of residents with limited mobility did not have the opportunity to take walks outside.
“We once found a lady who couldn’t walk, and she had a bed sore that was so bad that you could literally see bone,” Tarasova said. After more than a year of war, Tarasova said these institutions are now overwhelmed by evacuees with disabilities while staff shortages have worsened as many workers fled the country.
Conditions are so bad in some facilities that some residents have opted to return home, choosing the risk of being crushed in a collapsed building over discomfort and degradation.
“It’s better for me to be under shelling than to be there,” Viktor Krivoruchko, 54, said of the nursing home near Uman where he was taken in December. During his harrowing stay, he said his passport was taken away, the air reeked of human excrement and the staff routinely failed to change the diaper on one of his roommates, a double amputee. “It was living hell,” Krivoruchko said.
Krivoruchko, who has speech and walking difficulties following a stroke seven years ago, said he stopped eating to pressure the facility into helping him leave. After four days, a sympathetic staffer returned his passport and drove him to the bus station.
Now he is back in his house in Mykolaiv, a city that comes under repeated missiles attacks, and where there has been a lack of fresh water since the early weeks of the invasion. He hears explosions, but he is hard of hearing and said they seem distant.
With thousands of residences destroyed and officials forced to pack more and more disabled people into institutions, advocates worry that Ukraine will be set back years in its efforts to modernize standards of care, accessibility and independent living.
Berkova, for example, spent 20 years waiting for her own state-provided handicap accessible apartment in Kharkiv, where she hoped to live independently from her parents with the help of a visiting social worker. Before the invasion, she still dreamed of this possibility.
Instead, she now lives in a modest room in the Dnipro nursing home she found with help from her pastor. Two twin beds are pushed up against the walls — one for her, decorated with a stuffed animal that has comforted her since she had to leave her two cats in Kharkiv, the other for her roommate, who cannot speak. On the wall, a yellow smiley face clock ticks away the hours she spends inside each day.
Advocates feel helpless. “I’m scared to think about people getting stuck in institutions,” said Larysa Bayda, program director for the National Assembly of People with Disabilities in Ukraine. “But at present in Ukraine, there is no other accommodation that could house this great number of people.”
Bayda is one of many advocates who are pushing for the Ukrainian government to ensure that postwar rebuilding efforts include more accessible housing, and alternatives to the old approach of warehousing people with disabilities in institutions.
Oksana Zholnovych, Ukraine’s minister of social policy, said that the government is trying to provide adapted apartments for disabled people, but that they are not enough of them and funding is limited. The ministry is also trying to raise wages to recruit more workers and meet the growing demand for social services.
“Despite the huge challenges we are facing, especially for people with disabilities, we are not stopping our effort to move people out of institutions,” Zholnovych said.
But as long as the war continues, the number of disabled people being institutionalized is only growing.
Early in the invasion, those with financial means, and family who could help them, fled. Now, as conditions become more desperate, particularly in cities and towns along the eastern front, people with disabilities who tried to say in their homes are being forced to evacuate.
Olena Shekhovtsova, 63, tried to stick it out in Kramatorsk, in the eastern Donetsk region, with her 97-year-old father, Petro Serduchenko, who lost the use of his legs and an arm after a series of strokes five years ago. Moving him seemed more dangerous than taking their chances in this city 18 miles from Russian lines. When the biggest explosions hit, she would roll her father into the second-floor hallway before dashing to the basement.
But when an artillery attack destroyed a nearby building last month, killing three residents and shattering the windows in their apartment, Shekhovtsova decided to get him out.
On a drafty February morning, two volunteers with Vostok SOS, one of the few aid groups able to evacuate people with disabilities, lifted her father into a wheelchair. They carried him down the stairs and lowered him onto a pile of blankets on the floor. Then their van raced four hours west to the town of Pokrovsk, where he was carried in a blanket onto a special evacuation train that departs for Dnipro everyday at 2 p.m.
Vostok SOS has taken more than 5,000 civilians from the front, navigating cratered roads and, more recently, snowy conditions. Serduchenko was one of the lucky ones — Vostok drove him to his granddaughter’s apartment when he arrived in Dnipro.
But sometimes it takes hours, or days, to find housing for disabled refugees. Very few shelters have bathrooms or showers that can be used by people with wheelchairs, and modular camps built to house refugees do not meet minimum disability accessibility requirements. Some shelters will not accept a disabled person unless a family member commits to care for them.
“Evacuating them is hard, but finding a place for them is harder,” said Yaroslav Kornienko, head of evacuations for Vostok. The group has compiled a list of every accessible shelter, rehab center and institution in the country and sometimes must phone them all in search of a bed. They have also bought beds for some facilities as the system was stretched beyond capacity.
Vostok takes many evacuees to a low-slung maternity hospital in central Dnipro that was evacuated at the start of the war. The city gave the structure to a local nonprofit which, using donations from the United Nations and other groups, has built ramps and widened the doorways to create a 70-bed temporary, accessible shelter.
The shelter’s director, Olha Volkova, launched the facility a year ago after seeing disabled evacuees stranded at the Dnipro train station. Volkova, who has a disability herself, opposes the institutionalization and segregation of people with disabilities. Her shelter focuses on rehabilitating residents to be more independent and giving them as much freedom as possible while also having enough equipment and caretakers to assist residents with daily needs.
“My approach was to create conditions and offer services I myself want to have,” she said. “In an institution, life is not life. Basically you just stay there until you die and that’s it. And everyone around you is waiting for the same thing.”
Now, Volkova oversees a staff of 40 and is seeking funding to double the shelter’s capacity.
But her shelter cannot house disabled refugees indefinitely, because it must make room for incoming evacuees. As the war drags on, Volkova says, it is getting harder to find permanent living solutions for her shelter residents. The disabled refugees now arriving are increasingly older and have greater support needs.
Most of the time, she said, she has no choice but to send them to an institution. And sometimes, even the institutions are full.
Morris reported from Washington.
