As of the end of 2022, Ukraine had registered 2.7 million people with disabilities, with 165,000 of them being children. More than half of these individuals have received disabled veteran status or have left the country, which has highlighted a range of issues. In this article for Shotam.info, Niia Nikel provides a detailed account of the main issues faced by people with disabilities.
Destruction of Personal Infrastructure
Few of us think about it, but people with disabilities build their own personal infrastructure. People with disabilities rarely move and find it difficult to adapt to changes. They spend a very long time exploring the accessibility of an area step by step: in this store, I buy vegetables because I can get in with a wheelchair, in this bank, there's a ramp, and this taxi driver always helps fold the wheelchair, and so on. It's a complex system of specific individuals, accessible buildings, and connections. When deciding to leave an area, a person decides to leave everything behind and start from scratch, sometimes spending 5 hours traveling around an unfamiliar city in a wheelchair in search of an accessible restroom or a store with a ramp.
Imagine you've arrived in China, don't know the language, don't have access to the internet, and need to get from one end of the city to another. How do you buy a ticket? Where do you exchange money? Where are you, and where do you need to go? This is how a person with disabilities feels in every new city.
Medical Collapse
The first and most obvious issue is changing family doctors and re-signing declarations. This is a critical moment because not every doctor has the competence to work with people with disabilities. They may not understand how to treat a person whose body reacts non-standardly or who is palliative, meaning incurable. In many cities, there are palliative services that help such patients, but due to the war, many of their clients have become disabled and cooperation has ceased. The second, and extremely widespread problem, is medication. Currently in Ukraine, there are several ways to obtain free medications:
- Directly at the hospital;
- At the pharmacy through the reimbursement program (the patient receives medications for free or with a small co-payment, and the hospital pays its part to the pharmacy);
- From volunteers/religious organizations for medications that are not registered in Ukraine.
And here new obstacles arise, as not long ago, the Resolution 1303 (reimbursement) and the "There are Medications" ("Accessible Medications") program came into full force, and now many doctors do not know how to prescribe and order these medications under the new regulations. It's easier for them to say that there are no medications, although such a concept does not really exist for registered medications. If there are no medications at the hospital now, they are required to purchase them for the next month. However, neither doctors nor patients understand how this happens.
Taking all these problems together, we have the following:
- You need to get to an inaccessible hospital to sign a new declaration;
- The doctor needs to prescribe heavy medications (some of which may contain morphine and other narcotic substances for pain relief) that they have never prescribed before;
- Doctors who used to prescribe them still don't know how to do it due to changes in state programs.
Socialization Collapse
People with disabilities build relationships with their surroundings over the years. Having various problems with the musculoskeletal or speech apparatus, they are hard to understand, and people often fear and try not to look them in the eyes. Places where they could potentially find friends, such as cafes or interest clubs, are 99% not adapted for people with disabilities. Becoming a person with disabilities, a person literally remains in solitude and loses motivation for development.
But, to be honest, there are many more problems, they are literally at every step: how to rent housing in a new place, taking into account the need for an elevator, a flat entrance to the building, and a more or less spacious bathroom? And if you add super competition in relatively calm cities and a limited budget to this task? How to find a job if even regional centers don't have enough jobs, even for healthy people? How to get an education if Ukraine didn't have enough facilities for people with disabilities even before the war? Unfortunately, there are many more questions than answers.
What to Do About All This
For myself, I see the following solutions:
1. Strengthening decentralization and regional funding for city adaptation to inclusivity. Building ramps, lifts, purchasing social transport, and paying for assistants.
2. Development of NGOs that support people with disabilities, providing grants for educational programs, programs for professional retraining of people with disabilities, and psychological and social support.
3. An information campaign about changes in reforms, medical and social systems for transparency and understanding by all participants in what is happening. Including explanations in plain language in the national telethon and internet publications.
4. Most importantly: involving people with disabilities in their issues. Creating accessibility? That's great! But how many people with disabilities are involved in this process? Want to create educational projects? Ask people with disabilities if they have the resources for this right now and if so, who they want to be?
Dialog and transparency about the needs of people with disabilities instead of hundreds of thousands of wasted budgets – this is a cool European practice that we definitely need. I personally know about 80 NGOs that help people with disabilities, but they lack resources, mentoring, and financial management. Creating something like a "Action.Business" center, but specifically for NGOs, would accelerate inclusive processes by 1000%. So, my recipe looks like this: dialogue, consolidation, mentoring, and resourcing.
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