Ukrainians with disabilities and their families struggle as war makes life even harder


Halyna Chernyshova feeds a rice drink to Sasha Kharitonov in Slavutych, Ukraine. Sasha is her deceased daughter-in-law’s son, and with the death of his mother he is left without any close relatives to care for him.

Kyiv, Ukraine (CNN) — As Ukraine marked a year since Russia’s full-scale invasion, Sasha Kharitonov spent his days lying in a bed in a corner of a small room that smelled of cigarettes and had Russian TV playing in the background.

He’s 17 years old but unable to move or eat on his own because of a severe form of cerebral palsy. He has frequent seizures and sometimes struggles to breathe.

Sasha requires round-the-clock care, but after his mother died three months ago no one was willing to take care of him. He continued to live with his disabled stepfather and step-grandmother Halyna Chernyshova, an 81-year-old woman who sometimes refers to him as “it” and who openly contemplated whether he “would be better off with his mom.”

During a visit last month to their home in Slavutych, near Ukraine’s border with Belarus, the family told CNN they had tried to find a place for Sasha in a care home but were repeatedly turned away. Many facilities were either damaged in the war or are full of patients from occupied regions.

His distant aunt, Lilia Seheda, wanted to take him in, but as the single mom of two children, it’s too much for her. Instead, she’d visit a couple times a day and help feed or change Sasha. Sometimes she’d read to him, watching his faint smile.

Chernyshova prepares a meal for Sasha in her kitchen in Slavutych.

The war has put a huge strain on Ukraine’s healthcare system and has had a particularly devastating impact on people living with intellectual disabilities and their families. Their conditions are often invisible to the general public and remain widely misunderstood in Ukraine. The community was suffering from a chronic shortage of support services even before the Russian invasion began last February. With resources diverted towards the war effort, the few that did exist are struggling to cope.

“I have been told by officials that care and support for people with intellectual disabilities and their families is ‘a luxury’ during wartime. So, we will have to wait until after the war to have this luxury,” said Raisa Kravchenko, the president of the All Ukrainian NGO Coalition for Persons with Intellectual Disabilities.

Kravchenko’s own son, Oleksiy, has an intellectual disability and behavioral disorders that are possibly related to his traumatic birth. He was born in what was then Soviet Ukraine in the mid-1980s, at a time when the standard procedure was to put disabled children in institutions.

That was not something Kravchenko was willing to do. Instead, she started researching Western approaches to care for children with intellectual disabilities and complex behavioral disorders. By 1994, she was in charge of an after-school club. Two years later, she co-founded Djerela, one of Ukraine’s first NGOs focused on supporting families living with disabilities.

Clients have lunch at Djerela, a retreat for people with intellectual disabilities in Bohuslav, Ukraine.

The countryside retreat offers an escape from the harsh reality of the war.

Clients at Djerela relax during an afternoon rest period.

Among Djerela’s key initiatives is a retreat program at a country house in Bohuslav, a town about two hours’ drive south of Kyiv.

The place offers a chance to escape the war. There’s a forest and a river nearby and plenty of fresh air. And because the property is so remote there are no air raid sirens and — thanks to recently installed solar panels — no blackouts.

On a recent Saturday, the common room was transformed into a disco hall. A colorful party light was flashing, giving the otherwise dark room a green tint.

Oleksiy Kravchenko, Raisa’s son, spent most of the evening with his friend Maryna Klepets. No matter what kind of music was on, the two were slow dancing, standing about two feet apart from each other, holding hands and shuffling from side to side.

Clients at Djerela hold an evening dance party.

Families left without help

Most of the time Maryna prefers to keep to herself. She often avoids eye contact and occasionally hides her face by pressing her chin into her shoulder.

Maryna, 26, has autism spectrum disorder and behavioral and intellectual disorders, according to her mother Yuliia Klepets.

At home, she likes to sit in her favorite spot, a comfy couch in the kitchen where she can leaf through magazines and books. She likes to have something on in the background, TV or radio. And she loves to draw. Sometimes, she draws the war, she told CNN. She uses the colors of war: grey and red.

The early days of the invasion were particularly challenging for the Klepets family. Maryna didn’t like going into the shelter and found the constant sounds of war very unsettling. There also wasn’t any signal in the basement, so she couldn’t listen to anything to distract herself. She spent one night just lying down, talking to herself.

Maryna Klepets, left, has autism spectrum disorder and behavioral and intellectual disorders. She is seen here at her Kyiv home with her mother, Yuliia Klepets.

Maryna Klepets spends time with her elderly grandmother, who lives with the family.

Seen from a window of the Klepets family home is a building, at right, that was hit by a Russian rocket in the early days of the war and has since been repaired.

She told CNN she “saw bandits kill a woman outside,” most likely referring to a strike that hit a residential building across the street from her home.

“When a person gets killed, it smells like blood. It smells like war,” she said.

Yuliia Klepets is a single mom with a full-time job and an elderly mother who is also fully dependent on her. Caring for Maryna has been difficult.

The trips to Bohuslav are the only time Yuliia can get some respite, away from Maryna. And Maryna seems to enjoy the trips. She comes back happier and calmer. It would be ideal to have this option more often.

“Once a month for 10 days would be great, not all the time. I miss her and she misses us,” Yuliia said.

Maryna Klepets hugs her mother at their home in Kyiv.

Until the war, the retreat program was partially funded by the Kyiv municipal government. Each 10-day stay costs about $580 per client and a foreign sponsor has stepped in for six months, but the money is running out. And while families could pay for additional stays privately, the cost is prohibitive for most.

Kravchenko said the chronic lack of support means many families face an almost impossible choice between placing their child in an institution or managing entirely on their own.

When the parents get older or can’t cope with the care load anymore, the only other option is an institution. Kravchenko said that while this has always been a problem in Ukraine, the pressures of the war mean many more families are struggling. Roughly 40,000 people were institutionalized before the invasion. According to the Ukrainian government, around 4,000 new people were sent into institutions in the first few months of the war.

In 2017, Ukraine’s parliament approved a plan to overhaul the country’s social care system which includes a shift from residential care to community-based support for people with intellectual disabilities and their families. But like many other initiatives, the plan has stalled because of the war.

Djerela director Raisa Kravchenko, left, watches staff and clients as they work in the yard of the retreat house.

CNN has repeatedly reached out for comment to several Ukrainian government departments and many residential facilities in the Kyiv region, but has not received answers to specific questions about the availability of services and funding.

“The dream is to have more assisted-living facilities,” Kravchenko said. “And we need the government’s support for family-based foster care of adults because, right now, foster care in Ukraine is only legal for children. Youth with disabilities who have no parents can be in foster care until they are 23. Once a person is 23, then that’s it, he or she is placed into an institution.”

‘How could we leave him?’

Because the law doesn’t provide for adult placement in families — a common practice in many Western countries — many carers may not be eligible for meaningful help from the state.

Halyna and Oleksandr Pylypenko know this. The couple, both in their sixties, recently fled Mariupol, the southeastern Ukrainian city that was flattened by Russian troops during a brutal campaign of bombardment last year.

They now live in Bohuslav in the Kyiv region alongside their son Andriy, who has mental health problems, and Sasha Shevchenko, a 65-year-old man with Down syndrome they rescued from Mariupol.

Sasha Shevchenko, left, a 65-year-old man with Down syndrome, hugs caregiver Oleksandr Pylypenko in their temporary home in Bohuslav.

Shevchenko and caregiver Halyna Pylypenko step outside.

Shevchenko is non-verbal and needs a lot of help in his daily life. He is always smiling and keen to hug people, even strangers. He has a very sweet tooth and loves to show off a fancy box of chocolates he recently received as a gift.

“He has a heart of gold,” Oleksandr Pylypenko said, sitting next to Shevchenko on a sofa in their temporary home in Bohuslav, found through an NGO affiliated with the one run by Kravchenko. Every now and then, Shevchenko leans over to Pylypenko and plants a kiss on his face, smiling widely.

Since Shevchenko’s mother died in 2016, he had been living on his own, getting help from carers paid by his nephew who lives in the United States. Halyna Pylypenko was one of them. She would come in the morning, help him get up, take him out for a walk or to a club for people with Down syndrome and spend the day with him. In the evening, she’d put him to bed, lock the door and leave.

When the war started, this was no longer an option. So, the Pylypenkos took Shevchenko in. When they decided to flee — after spending almost a month sheltering in a basement with 35 other people — they took him with them.

Shevchenko plays with a cat at the family’s temporary home.

“If he stayed alone, he would not have survived. That’s impossible. It wasn’t even a question for us. How could we leave him … look how nice and good a person he is!” Halyna Pylypenko said.

They don’t have legal guardianship over Shevchenko who is, in the eyes of the legal system, competent to take care of his own affairs. The family — two pensioners with an ill son who are internally displaced — have lost everything in the war, including legal documents they needed to be able to ask for assistance. After four months of bureaucratic back and forth, they managed to restore Shevchenko’s disability payments, although the amount is very small.

“This is not altruism. He has made our lives better,” Oleksandr Pylypenko said.

‘Don’t shut them in care homes’

Maksym Kapustianskyi is always on the move. At home, he paces constantly from one room to another. Sometimes he spins around or hops on the spot. On every round trip of the living room, he walks to one particular corner and touches the wall, as if to check it’s still there.

Every weekend, Maksym’s father Yuri Kapustianskyi takes him on long walks to occupy and entertain him: Two hours in the morning, two hours in the afternoon.

Maksym Kapustianskyi, who has severe autism spectrum disorder, is seen at his grandmother’s apartment in Kyiv where he usually spends weekends.

Maksym, left, walks alongside the Dnipro River in Kyiv with his father, Yuri Kapustianskyi.

Maksym’s grandmother, Liudmyla Kapustianska, has tea with the family at her Kyiv apartment.

Maksym, who is 16, has the same diagnosis as Maryna Klepets, autism spectrum disorder — but a very different experience of the war.

“He doesn’t really understand. He acts like a two-year-old,” Yuri Kapustianskyi told CNN. “We were on a (evacuation) train with eight other people and he just lay there. We were already in western Ukraine, fast asleep, when two missiles whizzed by at 3 a.m. We could hear either shrapnel or mud hitting the roof. And he lay there smiling. As if he understood it was a stressful situation and he had to be helpful. There wasn’t a peep out of him,” he said.

When the full-scale Russian invasion began, Kapustianskyi, a single dad who says his wife left him and Maksym eight years ago, walked five hours from his home to the boarding school where Maksym was staying Mondays to Fridays to pick him up and take him to safety.

On the journey back, he realized how dangerous the lack of understanding of his son’s condition could be.

Kapustianskyi and Maksym get ready for a walk.

“There are (army) headquarters all around in that neighborhood, men with guns everywhere. And he ran around, getting on their nerves,” he said.

To him, it all boils down to education.

“Don’t shut (disabled people) in care homes,” he said. “If they take these kids to the zoo, make sure ordinary kids are there too, say a class of neurotypical kids goes alongside a class of autistic kids so they can mix. Organize visits to the care homes, let them play soccer together.”

It’s something Yuliia Klepets agrees with. “I don’t want people to feel sorry for me. I just want them to understand us, not to be afraid of people like Maryna, have more information,” she told CNN.

Like many other parents of disabled children in Ukraine, Valentina Repich has spent most of her life being told she should send her son Yaroslav away.

Psychologist Olha Titorovska works with client Yaroslav Repich at BlahoDar, a Slavutych rehabilitation center for people with disabilities.

A view through a curtain out the window of the BlahoDar rehabilitation center.

“He was overdue and when he was born, it was immediately obvious that he wasn’t a healthy baby,” she told CNN.

Yaroslav was diagnosed with congenital hydrocephalus and Dandy-Walker syndrome, conditions doctors said were a direct consequence of the Chernobyl nuclear disaster, which happened 22 months before he was born.

He too requires roundtheclock care. He can indicate he needs to go to the toilet but can’t eat by himself. But he does like to be around people and used to love standing on the balcony watching the world go past. That was before the war.

Slavutych, where he lives, was occupied by Russian troops for more than a month. The city was cut off from the rest of Ukraine and supplies were limited. The sound of sirens, missiles and military planes flying overhead was near constant.

These days, even months after the Russians withdrew, Yaroslav avoids the balcony.

Most days, Repich takes Yaroslav to BlahoDar, a local rehabilitation center for people with disabilities, where he receives physical therapy and spends time with other people. She said that the center’s closure during the occupation was tough on the family — without the therapy and company of others, Yaroslav’s state deteriorated.

Clients at the BlahoDar rehabilitation center take shelter in an interior hallway during an air raid alert.

Now, back at the center, Yaroslav is thriving again — even though he and all the center’s other clients are often forced to spend hours sitting in a cold corridor wearing their winter coats, waiting for the air raid alarms to be lifted.

The future looks less happy for Sasha Kharitonov. With nobody able or willing to care for him, he was transferred to a facility near Kyiv in early March, days after CNN’s visit. The place is not designed for a long-term stay, but an exception was made in Sasha’s case because there’s no space for him elsewhere.

It’s not the kind of place where Seheda hoped the teenager would end up. When he first arrived, he struggled to eat, as he had after his mother’s death.

“I told them, of course, this is a new environment for him, it’s stressful and he needs to adjust, but the nurse told me that they don’t have time and if he doesn’t want to eat normally, they’d force feed him with a tube,” she said.

Seheda is still hoping to find a better solution for the boy, a place where he’d be allowed to live a fuller life. Until then, he will have to keep surviving.

Sasha Kharitonov’s distant aunt Lilia Seheda watches Halyna Chernyshova feed Sasha from a bottle.

Editor’s note: As the war in Ukraine stretches into its second year, people living with disabilities suffer. An emergency fund in aid of the All Ukrainian NGO Coalition for Persons with Intellectual Disabilities was set up.

Many other organizations are also providing humanitarian assistance. As of March 2023, CNN audiences have donated over $8 million to provide humanitarian aid to the people of Ukraine.


Source link

Leave a Reply

Your email address will not be published. Required fields are marked *

You may also like these

Translate »