Ukrainian families are finding better opportunities for their children with disabilities in Poland. Local volunteer organizations help them on their journey to adapt to their new life.
When the first wounded soldiers began arriving at the hospital in Kyiv, Victoria Mostovenko knew she had little time to transfer Sofia, her 4-year-old daughter with cerebral palsy and epilepsy, to the nearest medical center where she could continue fighting her own battle with pneumonia.
After a bumpy two-day journey in different intensive care ambulances, Mostovenko, 36, became one of the Ukrainian parents of children with developmental disabilities who evacuated to Poland escaping the terror of the Russian army. Here, families like Mostovenko's have found better special education opportunities and less stigmatization than in Ukraine, where there are 2.7 million people with intellectual disabilities, according to the European Disability Forum.
Since her arrival in Krakow, Mostovenko has received help from local non-governmental organizations like Stowarzyszenie Patchwork and Special School 11, which facilitate her and her daughter's adaptation to life in Poland. Stowarzyszenie Patchwork, founded by four Ukrainian mothers of children with developmental disabilities who emigrated before the war, along with a mother and a special education teacher from Russia, has provided comprehensive step-by-step care to more than 50 Ukrainian families in Krakow since the Russian invasion began on February 24.
Access to adequate housing, language barriers, long-term therapy and financial sustainability, are among the main concerns for Ukrainian refugee families with disabilities.
"We help them stand on their feet, leading the families through their first steps of the integration process," says Khrystyna Rudenko, co-founder of Stowarzyszenie Patchwork and Bachyty Sercem, a Ukraine-based non-profit organization that continues to serve families with disabilities.
"We provide help for applications to Polish disability papers, for children to get admitted to kindergarten and schools, remembering how challenging it was for us when we arrived in Poland."
In 2014, Rudenko left Ukraine for Germany and then Poland, where her daughter Sonia, who has cerebral palsy and epilepsy, received treatment that is difficult to access in her country. Thanks to the help of Polish specialists, she claims, Sonia learned to eat unaided in a matter of months.
"They started doing miracles right from the start." Rudenko wants the same opportunities for Ukrainian families fleeing the war.
Bringing new treatments back to Ukraine
While many want to settle in Poland for these reasons, others like Mostovenko hope to return to Ukraine soon to promote a more modern approach to the treatment of children with developmental disabilities.
"Most of Sofiia's seizures are mitigated with CBD," Mostovenko says, praising the high efficacy of this active principle of marijuana. Although licit in Poland, the legality of CBD in Ukraine remains in a gray area, making it difficult and risky to access.
Before the war, Mostovenko had her CBD shipped from the US to Poland, which her friends would then smuggle into Ukraine in their luggage or first aid kits. Mostovenko believes that faster legalization of medical cannabis in Ukraine would also help wounded soldiers deal with pain when the war is over.
Mostovenko explains that outside of Kyiv and larger cities where better quality but private facilities can be found, public palliative care is only on paper and can be limited to handing out diapers and consumables.
The psychological toll of evacuation
Natalia Abramova, another Ukrainian refugee mother who receives assistance from Stowarzyszenie Patchwork, agrees.
She and her 20-year-old son Anton, who has autism and severe epilepsy, had to leave their town of Severodonetsk in the Donbas in 2014. The recent recognition of separatist forces in Eastern Ukraine by the Russian government was a signal for her to leave Ukraine before the war broke out again.
"Anton's wall is shattered, not by bombs, but by the change of it all," Abramova says.
The evacuation left Anton in a fragile state, much more sensitive to noise and crowds. A few days after his arrival in Krakow, he suffered a grand mal seizure —a violent type involving loss of consciousness— after his neighbors knocked on his door to complain about the noise. The several scabs on Abramova's arms are still fresh. "I need all my strength to survive," she confesses.
"The fact that he is not able to go back home, the fact that he may never see his cat, which he considered his best friend, now leads to all undesirable circumstances," she says. "I believe that he is depressed now."
Accommodations among the main concerns
Abramova, 56, is stressed over finding suitable housing in Poland. They currently live in a one-room apartment in Krakow, where Abramova placed a bookshelf in the middle of the room to create the illusion of a private space for Anton, like the one he had in Severodonetsk. They live rent-free thanks to contributions made by Stowarzyszenie Patchwork, but as of May 1 they will be on their own.
"We need to stay here at least for the next five years for Anton to be able to attend school," she says. Special education in Polish schools is available to students up to the age of 24, while in Ukraine only until 18.
In 2010, Abramova founded Rainbow Children, a charitable organization in Severodonetsk that served up to 50 children with developmental disabilities before the war began in 2014. Without government funding and in the midst of another war, the organization has been reduced to social networking between parents.
"Post-Soviet countries never cared about people with disabilities," she says. "They didn't want to see them, they didn't want to spend any of the state budget on them."
Soon, many families will be relying on themselves to get on with their lives, either back in Ukraine or in Poland. Although the current funds are running out, Rudenko says her organization will continue to support where it can. "We stand by if they have other issues," she says.
Edited by: Andreas Illmer
Author: Manuel Orbegozo (Krakow)
First published: April 14, 2022
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