“Responding to changing circumstances” – the Organisation of Muscular Dystrophy in the Slovak Republic
The Organisation of Muscular Dystrophy in the Slovak Republic is a member of the Slovak Disability Council, from which it is receiving funding support to purchase specialised medical equipment as part of the response to the war in Ukraine. The support is being provided within the framework of EDF’s Ukraine Programme, funded by CBM International.
The Organisation of Muscular Dystrophy in the Slovak Republic (OMDVSR), counting 420 members across Slovakia, provides social counselling, employment assistance and direct aid to persons with neuromuscular diseases as well as persons with disabilities at large. During EDF field visit to Slovakia in August 2022, Director Andrea Madunovà proudly commented that the organization has been particularly responsive to rapid societal changes: it was very successful during the COVID-19 crisis in ensuring COVID vaccinations for people with muscular dystrophy and personal assistant support funds for their family members during lockdown.
Indeed, OMDVSR has also moved very quickly in aid of the people crossing the border from Ukraine: soon after the start of the war in Ukraine, the organization partnered with the Slovak Red Cross to help people crossing the border. They lent wheelchairs to those persons with disabilities who had been forced to leave their own wheelchairs behind in Ukraine, as well as to elderly people and those who simply needed to keep moving but were physically exhausted and needed the rest. “People feel more confident when they arrive and there is an empty wheelchair they can use”, said Andrea.
While continuing to provide help to countless people on the border, the organization has opened the second phase of its humanitarian operations. They now provide direct assistance and social counselling on healthcare, housing, grants systems to refugees with disabilities and their families from Ukraine that have settled in Slovakia. Initially, when barrier-free accommodation was not a priority in Slovakia, they worked to find accessible living spaces for wheelchair users fleeing Ukraine.
The funding from the Slovak Disability Council, EDF and CBM has contributed to the development of this phase by financing the purchase of specialized equipment, including two folding hoists, two power wheelchairs, three folding ramps for wheelchairs and two non-contact eye navigation trackers for people with physical disabilities. According to Andrea, the CBM-funded project was important because it allowed them the rare opportunity to buy high quality equipment which can be loaned to people who require it, as well as personal fitting services of wheelchairs for their community.
Looking at the future, Andrea and the rest of the team at OMDVSR believe that it will become increasingly important to direct more efforts to the refugees with disabilities in Slovakia and their full inclusion in the community. In this sense, it will be vital to keep pushing Slovak policy makers for policies that are inclusive to persons with disabilities.

Image credits: Jozef Blazek – OMDVSR’s work on the Ukrainian border

Nastia
Nastia, Iryna and their family have received support from Patchwork -Association for Immigrant Families of Persons with Disabilities. It is now receiving funding by the Polish Disability Forum, for the provision of healthcare and basic needs. The support is being provided within the framework of EDF’s Ukraine Programme, funded by CBM International.
Nastia, a 5-year-old child from Kyiv, came to Krakow, Poland, in March, with her mom Iryna, her dad and her two sisters. In late February, as Kharkiv began suffering heavy shellings from the Russian troops, Nastia’s family decided it was time to leave Kyiv, afraid that the situation in their city would become more dangerous soon.

Evacuation was difficult for her family: it was hard to explain the situation to the girls and, as they managed to leave their apartment, they missed the last subway and could not find any alternative to get to the train station. Finally, a family friend agreed to give them a lift to the station, where they boarded an evacuation train heading west and arrived to Lviv. They never thought they would leave Ukraine, but in Lviv they were advised to flee to Poland.

Nastia has autism and is non-verbal, being able to use only a few words while in Ukraine, so it was very important for her to continue the speech therapy that she had started back in Ukraine and had to interrupt.

In Krakow, Iryna enrolled Nastya in a special education preschool and, while talking with the mom of another child from Nastia’s school, she heard about PATCHWORK.

PATCHWORK helped find a speech therapist in Krakow for Nastia, and the therapy’s results are starting to become very visible: she can now spell the Ukrainian alphabet on her own. “This is a balm to my soul” says Iryna, as Nastia picks up an alphabet book and starts reading the letters out loud.

From July, PATCHWORK has become a Polish Disability Forum’s (PDF) partner in the CBM-funded Ukraine project. Since then, PDF has financed the purchase of supplies to respond to Nastia’s specific requirements and is in the process of arranging medical treatment for her. Iryna is very grateful for all the support and help her family received from her friends and the organization.

She would be happy to go back to Kyiv, but the situation in the city is still unsafe for her family. Originally, her family thought that they would only have to spend a few weeks in Poland, but now they are prepared to settle in Krakow for a much longer time.

Andrii
CBM has committed 2.1 million euros in humanitarian assistance to support Ukraine and neighboring countries. Through a collaboration with the European Disability Forum and member organizations, such as SUSTENTO we aim to improve the situation of persons with disabilities.
On February 24th 2022, Russia launched a wide-range attack against Ukraine, resulting in a mass exodus of people fleeing and seeking refuge in host countries throughout the European Union.

The European Union granted residence and working rights to support Ukrainians in their resettlement process. With this, many companies rushed forward with Job opportunities to help those displaced settle quickly, one of which being Schneider Electric.

Knowing of the company’s aim to help resettle Ukrainian refugees coming to Latvia, SUSTENTO reached out to the company inquiring about the possibilities for persons with disabilities.

As part of the EDF Ukraine programme funded by CBM, SUSTENTO aims to support Ukrainian Refugees with disabilities with their registrations to work and finding employment opportunities, as many with disabilities often face barriers in finding accessible workplaces.

Wanting to make their work accessible to everyone, Schneider Electric adapted their new production lines following accessibility needs and welcomed Andrii as one of the first wheelchair users.

In the middle of March, Andrii and his wife were forced to flee their home in Dnipro. Both wheelchair users, the pair boarded a train to Poland, where they were later taken by volunteers to the Latvian Samaritan Association’s social centre in Riga, Latvia.

The Latvian Samaritan Association has a social care centre for people of retirement age and persons with disabilities in Riga, and over the last months it became a safe space/residence for Ukrainian Refugees with disabilities. The Association introduced Andrii to the team at SUSTENTO.

Though the EDF Ukraine programme funded by CBM, SUSTENTO provided Andrii with a wheelchair and connected him with Schneider Electric. Also, SUSTENTO staff went with him to the initial stage of the interview to see the possible place of his future job.

In Dnipro, Andrii once worked as a repairman for domestic devices, and was excited to be able to work again in any capacity.

Today, Andrii works as a technician who reworks products with quality issues and plans to bring the skill sets that he acquired from this job home, to Ukraine.

This testimonial was collected by CBM. Credits for the picture go to CBM.

Tatiana
Tatiana has received support by SUSTENTO organization for the provision of assistive devices, health care, accessible transport services and different kind of consultations. The support was provided within the framework of EDF and CBM joint programme.
Tatiana with her family came to Latvia from Kyiv. Tatiana is especially grateful to Gunta Anča, Chairperson at the Latvian Umbrella Body for Disability Organisations SUSTENTO, who helped to coordinate the trip and find home in Latvia.

Tatiana is the Authorized Government Official for the Rights of People with Disabilities in Ukraine. She continues to do her duties even though her daily priorities have changed. “In peacetime, my responsibilities are monitoring people with disabilities during of all stages of their life. I think I have been to all the institutions where people with disabilities live to check the situation and inform them of what they are entitled to. All the documents adopted by the government went through our office – we looked to see if they considered the needs of people with disabilities. Now my work is related to helping refugees, I can say that I deal with it 24 hours a day, seven days a week”, says Tatiana.

When the war started, Tatiana and her husband already knew that there were almost equal risks – to leave or stay. They are both in wheelchairs, making it impossible to enter the shelter or basement. “When the siren sounded, the son ran to the neighbors and asked for help. Everyone panicked. We realized that we need to find a quiet place to protect our son, because he refused to go to the basement without us”, says Tatiana. Tatiana, in collaboration with Gunta Anca and the organization she works for, has set up a refugee center in Lviv and Uzhgorod, Ukraine. There people with disabilities can spend the night, relax, take a bath, get medical and psychological assistance and then move further to another European country.

From Donetsk to Latvia – Evacuation to Rehabilitation
Residents from Bakhmut psychoneurological house have received support by SUSTENTO organization for the provision of assistive devices, health care, accessible transport services and different kind of consultations. The support was provided within the framework of EDF and CBM joint programme.
Because of the consequences of the invasion by the Russian Federation, 225 residents (men) of the psychoneurological boarding house were evacuated from the Bakhmut district (the village of Vesela Dolyna) of Donetsk region in March this year.

Taking into account the urgent need to provide them with comprehensive assistance and security of their lives, Latvia was ready to accept and provide proper accommodation, medical and rehabilitation assistance for 141 people. They were placed in 16 social care centers in Latvia.  Latvia takes full responsibility for their health and lives. People in our centers provide them with the necessary appropriate conditions adapted to their needs: spacious living spaces, appropriate medical and rehabilitation assistance.

Their way to Latvia was very difficult psychologically. All 141 people were very scared, they were especially afraid that they would be separated. They see themselves as a big family that cannot be separated and that cannot live without each other.

Вut upon arrival, our social workers quickly brought them into a calm mood. They have got everything they needed. The residents of the centers in which they are located are very friendly, they are happy to have those new “Ukrainian neighbors” and constantly communicate with them about how everything is going on in Ukraine and they are very interested in each other’s life.

Iryna
Iryna has received support by SUSTENTO organization for the provision of assistive devices, health care, job search assistance, accessible transport services and different kind of consultations. The support was provided within the framework of EDF and CBM joint programme.
Iryna and her son lived in Sniatyn, a small town in the Ivano-Frankivsk region. The son’s refugee journey began at home, and Iryna had to coordinate his journey and get to Poland from Dubai, where she was when the war started. And then to go to Latvia with her son. Iryna is Ukrainian professional archer (a four-time Paralympian).

“There were explosions, warehouses about 40 kilometers from where we lived, and my son was at home alone. The coach suggested finding someone to take him to Poland. After all, my sixteen-year-old son, who has a disability (muscular dystrophy), took a train to Lviv, which is 300 kilometers from our home. I contacted the Authorized Government Official for the Rights of People with Disabilities which took him to Poland. When we met there, I didn’t know where we were going. I found out on the bus that we were going to Latvia”.

Iryna has started regular training at the archery sports club in Latvia. She is the owner of many medals in competitions in her homeland and abroad, including the Paralympic Games, and has already won a medal in Latvia, representing, of course, Ukraine. Iryna needs to think about far-reaching solutions to prepare for and participate in the next Paralympic Games. The son has made new friends and acquaintances, participates in youth activities in the church, and it would be great to finish the 9th grade at school this year.

Vera
Vera has received support by SUSTENTO organization for the provision of assistive devices, health care, job search assistance, accessible transport services and different kind of consultations. The support was provided within the framework of EDF and CBM joint programme.
Vera is a Ukrainian woman born in Latvia. She has spent most of her life in Ukraine. She is now a refugee from Kharkiv. 

“In the early morning of February 24, there was noise from rockets and planes, continuous explosions. As a blind woman in such a situation, it is difficult to understand exactly where the bomb hits or explodes. I called the neighbor and asked him. I knew that during a flight or a shooting, two walls would give even a small hope of escape – one would stop the projectile, the other – the wave of the explosion. So, I should sit next to the bathroom. Because I live close to the army, the shootings were intense and regular around the one hour,” recalls Vera. 

“I talked to my daughter and decided to leave, although I was worried about how I would get out of the country when I am blind. After several days of searching and consultations, a solution was found, and I went on my way to Dnipro.

The next day I was helped to get on the train, and I went to Lviv. After that, my way led to Lithuania. And again – kind people and a lot of help.

If someone else told me that they could get out of a war-torn country without incident, I wouldn’t believe it. There were even problems with excursions or leisure trips. But for me, everything went like a treadmill”.

Persons with disabilities from Dnipro and Dnepropetrovsk area actively take part in financial support for Ukraine. They help refugees, hospitals, take part in logistics and settlement of refugees from Kharkiv for further evacuation to the western cities of Ukraine.

Tamara  is a widow and her son Jakob is a person with disability. They accept refugees in their house, give them food, provide them the place for sleeping at night, for the further moving into safe cities of Ukraine. Also they gave to the hospital a special compression mattress to prevent bedsores and a wheelchair. Shared hygiene products: adult diapers and underpads.

Most of all, our mothers are afraid that in this situation, during shelling or bombing, they will die before their children. And children who need help will live in pain and die a terrible death.

Therefore, we ask all people living on the planet to do everything to stop the war.