Barrier-free is a myth in words, reality remains far from promises
The last month in Ukraine has been filled with loud discussions and campaigns proclaiming the desire to make the country barrier-free for all. From the National Barrier-free Week to the large-scale initiative of the First Lady Olena Zelenska “Barrier-free is when you can”, promises of inclusion, equality and accessibility are heard in society. However, the realities of many Ukrainians, including parents of children with special needs, are radically different from these declarations. My interlocutor is Valentina Obolentseva, former acting head of the Department of Psychological Support of the Ministry of Defense, currently the head of the project to develop a rehabilitation network at the Patients of Ukraine charity fund. But her story, which I want to tell, is not only her personal experience. This is the resounding voice of hundreds and thousands of parents who have faced the indifference of the system and the unnerving promises of society. Valentina is the mother of a child with autism. She shares her painful and difficult experiences, which reveal the deep crisis of inclusive education in Ukraine. “You know, this is the first time I am telling my story publicly,” she says. “And if it weren’t for my own experience and the bitter reality, I would not have believed that such an attitude towards children with special needs was possible in our country.” Her story is a vivid example of how dreams of accessible education and real opportunities for such children are shattered by reality. When the full-scale invasion began and her son Philipp was only one and a half years old, the family was forced to evacuate to Ivano-Frankivsk region. There, in the village of Tatariv, the boy fell ill with an intestinal infection, and he had a severe setback in his development: he refused to eat his favorite foods, stopped walking, and had long-term difficulties with nutrition — he ate only pancakes in a blender, baked with various sets of products. After moving, the situation did not improve. They returned to Kyiv in the summer of 2022, but here they were faced with new difficulties — when kindergartens worked irregularly due to the war, they had to look for private institutions. The cost of such educational institutions then reached 25-40 thousand hryvnias per month, and additional expenses for speech therapists, defectologists, tutors, and treatment — even more. “Almost all of our attempts to enroll the child in kindergarten were unsuccessful,” says Valentina. “Private kindergartens did not want to take him because of his special condition, and state ones did not even offer help. Even after the assessment at the inclusive resource center, they told us that there were no places for such children, and they did not plan to work with them.” This is a standard answer that hundreds of parents hear. Therefore, Valentyna did not stop and found a speech therapist herself to help her son. In July 2023, after several months of unsuccessful searches, she was diagnosed with autism. Shock and despair were their first reactions. “I could not believe what was happening to our little one,” she admits. “I could not accept it for a long time, and a lot of things in my life changed.” According to her, in addition to the unexpected diagnosis, there were many other difficulties: finding a kindergarten, getting the necessary specialists, providing full support, which is absent in the system by default. Sometimes it seemed to her that she herself had to fight for her child’s right to a normal life. Valentyna emphasizes another point — in 2023, she began to fight not only for her child, but also for her right to access the system. She applied to the education department, wrote requests, underwent assessments in inclusive centers — the whole procedure lasted for months. It turned out that even in the capital — Pechersk district — there were no necessary specialists, and there was never anything in inclusive places in kindergartens. “I started looking for ways out,” she says. “It’s hard to imagine how difficult it is to find a suitable kindergarten for a child with autism, especially with the inability to speak, with problems with self-care. You spend all your strength, time, and money on this search — and there is almost no result.” For her child, Valentyna looked for private speech therapists, neuropsychologists, and organized classes herself — because the state systematically left her alone with her problems. This year, she finally managed to officially register her son’s disability status, and she hoped that this would make the situation easier. She experienced more than one nervous breakdown, because the process of finding the necessary specialists and setting up a development program alone required enormous costs — money, time, and energy. In just a few months, more than twenty different specialists were recruited to help the child return to a normal life. But here, too, the system failed again. In June 2024, according to Valentina, she was forced to register her child as disabled for the second time, because without this, even greater obstacles would naturally arise in accessing rehabilitation services. At the time of the assessment in September 2024, her son was still small — he is only three and a half years old, he does not yet know how to speak, does not have self-service skills. The system provided practically nothing in terms of help and support. The specialists to whom she entrusted the child did not receive funding to work with special children — and even those who do have to start from scratch. “We cannot even get basic recommendations for an assistant or a development program,” Valentina is indignant. “We have been denied access to consultations with speech therapists and psychologists, because there are simply no such specialists in state institutions. They say: look for others, or look for private ones. ” She has already organized additional classes herself, paying for everything out of her own pocket - more than 70 thousand hryvnias per month and more are now worth the development of a child. Her main ammunition is her son’s progress. “When I returned home from a business trip, he himself took my notebook and wrote in it: “Mom”. This is a small victory amidst endless difficulties and injustice. He counts to fifty, writes a little, already reads syllables, and even asked me to help with the lesson. This is the most valuable thing I have,” she says. However, the war, the unresolved system and the indifference of the authorities do not give her peace. She painfully recalls that in 2023 she could have left with her family for Canada, but stayed to fight for her right and her child’s right to a decent life. “We are part of the country, and it is incorrect to say that everything is fine. As long as state structures continue to imitate activity, children and parents are left to their own devices.” This is her cry of the soul, her struggle and her pain — and still she does not stop. She works in the field of rehabilitation, as a specialist who strives for change. Currently, her main field is the development of a comprehensive system of care available to every child and every family. “We must make this system closer to patients and families, because only in this way can real changes be made. Otherwise, all these promises will remain empty words,” she emphasizes. Her story is an extreme illustration of what is really happening to thousands of Ukrainian families — a system that is still far from ensuring the rights and needs of the most vulnerable. And while the authorities only promise, millions of parents are left alone with no hope, losing faith in the system and hope for the best. This is a struggle not only for the state, but also for human destinies, for the future and human capital. And it is still ongoing.