60% of Ukrainians believe that insufficient social payments and inaccessible environment are the main problems faced by people with disabilities in Ukraine. These are the results of a national sociological survey conducted by the public union “League of the Strong” at the end of last year.
Do people with disabilities see the same problems? “UP.Zhyttia” asked about the barriers that people with disabilities and their caregivers most often face in the field of medical and educational services.
This article was created by journalists of the Ukrainian Truth in cooperation with the League of the Strong as part of the Country for All project.
Bureaucracy faced by parents of children with disabilities
When Ivan was 8, doctors diagnosed him with subacute sclerosing encephalitis. This is a rare form of progressive brain inflammation caused by a persistent measles virus infection.
His mother, Maria Dychkovska, notes that the child’s condition changed: at first, the boy could not walk, and after rehabilitation there was some improvement. But the disease affected the nervous system, so he had epileptic seizures and convulsions.
The boy studies on an individual schedule – teachers come to his home.
“The condition of my son has deteriorated again. He can’t do anything without our help – he needs me or my husband to be with him”, – says Maria.
There are some problems with access to a hospital, as Ivan’s family lives in a small town in Ternopil region. To get professional help, they have to go to the regional center, which they cannot afford to travel independently.
“There is a social car to transport patients like my son. But you know, sometimes we can’t even pay half the cost of the trip,” – says the mother of a child with a disability.
But in Shumsk, where Ivan was born, there is a hospital where doctors can provide first aid or consultation.
“My son can behave in different ways: he can wave his arms and shout. You can’t force him to do something he doesn’t want to. But everyone in Shumsk knows us, so they support and help us.
If it’s not local people, they are confused, turn around, and there have been different cases. After 10 years, I don’t even pay attention anymore. It’s important that the child is fine,“ – says Maria.
She adds that her son does not always understand what is happening around him, so, for example, he may categorically refuse to enter the doctor’s office.
“ After his 18th birthday, in order to extend his disability by the Medical and Social Expert Commission (MSEC), he had to bring a certificate from the military commissariat stating that Ivan was not fit for service.
To do so, he had to pass a military commissariat commission regardless of his diagnosis. We had to take him for X-rays and tests, even though the diagnosis in that pile of papers hasn’t changed from year to year. I understand that this is the way it should be by law, but simplifying the procedure would greatly improve the lives of mothers like me,” – says Maria.
Maria receives a pension from the state for her son. Sometimes these funds are enough to pay for rehabilitation. But if it is available only once a year, the effect will be minimal, the mother says.
“At the end of 2023, we couldn’t go because Ivan was very emotional. Even if we go to rehabilitation, no one will take care of him there – there are classes or not.
The pension for children with disabilities doesn’t really cover the costs of treatment and rehabilitation“, – she adds.
Her wish is to increase opportunities for rehabilitation for children and adults with disabilities. In addition to improving accessibility for people in wheelchairs, Maria believes it would be advisable to reduce the bureaucratic red tape.
Medical commissions for the military: doctors’ attitudes
Viktor Popovych was wounded during a combat mission. The occupiers fired at his position from an anti-tank missile system. As a result, the soldier suffered multiple head injuries, his body was cut by shrapnel. But the biggest problem is the acoustic trauma – the explosion almost completely ruined his hearing.
“I have a hole in my head with a diameter larger than a five-hryvnia coin. I can’t hear anything but two sounds with my left ear. One of them is low, the other is high. And my right ear is on a hearing aid,” – the serviceman says.
Due to the head injury, the man has cognitive impairment – he has become less able to read. And this was the only way he could communicate for a long time after his injury.
“At first, communication was poor because I could not read. I could pay attention to 2-3 words. I slowly recall letters and form words.
It was easier to read the text on the screen than handwritten. That’s why I was mostly shown messages on the screen. But it was hard to focus on the information,” – he reminisces.
But the doctors’ attitude was friendly. Viktor noted that they filled in all the medical data correctly, and when he was transferred to another hospital, they provided him with an accompanying package of documents.
“They performed an operation on my shoulder, but rushed to remove the stitches – the wound healed in a few days, and 2 more fragments came out of it.
After 2 weeks, they stitched it up again, because it did not want to heal,“ – the serviceman says with a smile.
But not everyone was so lucky. Viktor told us that some of his fellow defenders faced less quality medical care and less warm human treatment.
After a long rehabilitation, the man began to collect doctors’ reports to submit to the MMC (military medical commission), and then to the MSEC (Medical and Social Expert Commission) to get a certificate.
“I haven’t passed the MSEC yet, I’m waiting for my unit to discharge me,” – says Viktor.
However, he doesn’t know if it will be easy, as sometimes the MSEC commissions delay their conclusions.
Currently, Viktor receives rehabilitation payments. They are enough, because most of the procedures are paid for by the state.
State aid is not enough even for the most basic needs
Myroslava Syklitska is the mother of 13-year-old Volodymyr, who was diagnosed with bilateral deafness in early childhood. He is the eldest of 6 children in the family.
His hearing loss was detected at the age of 2 after a severe infection. Before that, the boy even started to speak. It was not possible to establish the exact cause. According to the preliminary conclusions of the doctors, Volodya lost his hearing due to the impaction after meningitis.
“We had a long time of therapy with an audiologist and a speech therapist. Of course, I had a choice to send him to a boarding school for hearing impaired children, where he would learn sign language. I could also leave him at home and work with him on my own.
We live in the countryside, so even if my son learned to speak sign language, no one here would be able to understand him. I needed my son to be adapted in society,” – the mother says.
It took a long time to collect a lot of certificates and advisory opinions.
Myroslava notes that her son’s hearing situation is now stable – he underwent cochlear implantation, a surgery that involves the prosthetics of a defective receptor of the auditory analyzer, a spiral organ.
“My son now hears much better than before, when he was wearing hearing aids. He also began to speak better. Before that, his hearing was falling so rapidly that we were forced to agree to implantation – it was done at the state expense,” – Myroslava says.
However, the implantation surgery was not successful the first time. There were three attempts to restore Volodymyr’s hearing.
“It is difficult for Volodymyr not to hear even for a day – it is very stressful for him. We had situations when at the end of the day I came to remove the processor (a device that transmits sound), and my son asked me not to rush. My heart was breaking when he asked, “Can I have a little more time to listen?”, – Myroslava recalls.
Volodya studies in an inclusive class, and his mother is sincerely happy about her son’s success. She notes that the child has an excellent assistant, which makes the boy happy to go to school.
But social payments due to disability are not enough, Myroslava adds. The mother explained that the device requires parts from abroad to maintain. For example, expensive batteries for the processor, accessories, cleaning, etc. Their price is tied to the euro exchange rate.
There is a representative office of this Austrian company in Kyiv, but in case of a malfunction, you will have to wait a long time.
The article was created within the framework of the Empower Ukraine project with the financial support of the German Federal Foreign Office (GFFO), CBM, and the European Disability Forum. The views expressed in this publication are those of the authors and do not necessarily reflect the views of the financial partners.