This post is updated as situation develops. Highlights:
- UN CRPD Committee statement
- Al Jazeera English: What support do people with disabilities need?
- Call on EU to support refugees with disabilities
- Situation of refugees with disabilities
- Raisa Kravchenko talks to TIME magazine
- Summary of key issues
- Updates from March.
- Donate to help in Ukraine.
€ 430,000 fundraised for Ukraine – 29 April
Inclusion Europe fundraiser to help in Ukraine has provided over € 430,000 so far, thanks to contributions from organisations and individuals all over the world.
- Most of that money is helping in Ukraine already.
- The money helps families who were without income to buy food or other necessities.
- The money also helps to pay for assistance, day centre activities, and other ways to support people with intellectual disabilities and their families.
- You can make your contribution now here.
We talked with our friends from the Ukrainian VGO Coalition earlier this week. Milan Šveřepa says after the call:
Always good to hear from Raisa, Yulia, and others. To see they are ok, considering the circumstances.
Pleased to hear about the ways money fundraised by Inclusion Europe helps in Ukraine.
- With providing direct support to families, covering costs of assistance, helping to re-start some day-centre activities.
- In some cases, covering costs of minor refurbishments (replacing windows broken by bombs).
- Still doesn’t look like they reach to this kind of local organisations, to help them benefit form what they are doing.
- Houses are levelled, day centres destroyed and damaged. People with intellectual disabilities and families will need new places to live, work.
- Reconstruction plans and activities of international community must involve people with disabilities from the get go.
- To help create good future for people with intellectual disabilities and families in Ukraine.
“People have mobilized and joined together, neighbours are supporting and caring for each other” – 25 April
Slovenian public broadcaster published this article about the situation in Ukraine. Excerpts:
Larisa Bajda, head of public relations, National Council of Persons with Disabilities of Ukraine:
- I have friends who can’t go to a shelter several times a day, and have to shelter in the bathroom or in the hallway. This is mainly older people.
- Some people went into the shelter and lived there for a while.
- I have acquaintances who are blind. They come from Kharkiv, where they are surrounded by constant bombardment. They wrote to me that they were leaving the city because they couldn’t take it anymore, because they heard explosions around them all the time, leaving them completely disoriented in the room.
- Many people with disabilities have also left Ukraine.
- We have established six transit hubs for temporary or permanent refugees with disabilities. We provide humanitarian aid, we advise, but at the same time we talk about how to act and support people with disabilities when military operations are over and people start returning home.
- We would not have succeeded on such a large scale without the support of international organisations of people with disabilities.
Raisa Kravchenko, Ukrainian VGO Coalition:
- As far as we are aware, international programmes to help Ukrainian refugees do not pay attention to the needs of people with disabilities.
- Our partner NGOs try to find those with disabilities among refugees and provide assistance: volunteers help with care, inviting refugees with disabilities into day care, assisting them with accommodation and providing psychological support.
Kravchenko pointed out that assistance to people with intellectual disabilities in Ukraine was mostly linked to large institutions:
- Care was provided only in large institutions. If a family loses the ability to provide care, they suggested that the person be accommodated in a large institution. Prior to Russian aggression, the system itself violated and continues to violate the rights of community integration and personal assistance guaranteed by Article 19 of the UN CRPD.
- Our organization predicts the danger of a new wave of institutionalization. Many parents can burn out because of the heavy duties of care in war. Some mothers will die, and some families have already lost their homes.
- We call for help to obtain funding for community life support programmes instead of institutionalisation.
On the other hand, volunteering is being strengthened, the National Council says:
- People have mobilized and joined together, and the neighbours are supporting and caring for each other.
- Of course, there are many problems, the occupied cities suffer the most. The horror of the invasion is all the more evident because of the atrocities committed by Russian soldiers who kill activists, including disabled activists, rape women and children, shell out facilities for disabled people, destroy buildings and rehabilitation centres.
It is a shock to everyone, daily lives of people with intellectual disabilities have changed dramatically, Raisa Kravchenko says:
- Adults with disabilities who were lucky enough to have been employed in various centres around the country before the war lost their daily routines along with certain services.
- The impact depends on the capacity of the family on which the main duty of care has now fallen. If it is a family that can employ an assistant, it will be easier for the individual to survive the war, especially if he is provided with professional psychological assistance. However, such cases are rare, as in most cases they are single mothers.
- Even bigger problem arise for older mothers with adult children with intellectual disabilities, they also find it difficult to access information in an intelligible language. This often triggers a person’s behavioural problems, which can lead to violence.
- Even before the war, families struggled to protect people with disabilities. Some only go to relatives in the countryside or their own country houses. They do everything possible to help family members and continue to fight, taking into account new circumstances.
We are appealing to our international partners to accept refugees with cognitive disabilities, Kravchenko says:
- We are grateful to such partners as the NGO Amis in Denmark.
- We support families financially through Inclusion Europe fundraiser, which has already sent more than €300,000 to Ukrainian organisations. This money has enabled individual families to provide financial assistance, recruit personal assistants and professional social workers, to ensure that families have access to various humanitarian programmes (medicines, sanitation, food, etc.).
“I want the war to end” – 20 April
Family finds “kindness and empathy” in Poland
“Here is happiness – a walk with my sister under a peaceful sky, when you do not have to worry about how to get down on a wheelchair to the shelter… Fleeing the explosions in Kyiv, we ended up in Poland. We were greeted by the kindness and empathy of the Poles.
Ulyana asked with fear for some time about all the noise, whether it was a car or a household, or when a plane was flying. But now she lives her usual life. And rejoices in ordinary events. Playing with a ball, playing with her sibling. They both like it. These are the little joys of children.
On February 23, we were walking in Vidradny Park in Kyiv with friends from our family, and we had no idea that we would wake up the next day from the explosions. And we would hear this terrible word: War…”
- From VGO Coalition
Sergei G. talks about the war in a video from the VGO Coalition:
“I live in a city. I go to a centre. I grow plants, seedlings for gardens.
When the siren goes off, I’m scared. I hide in the bathroom or in the cellar when rockets arrive…
I want peace to come to Ukraine, an end to the war, and my relatives to return home, one of them is in the army.
“When the siren goes off, I’m scared.
I hide in the bathroom or in the cellar when rockets arrive…
I want peace to come to Ukraine, an end to the war, and my relatives to return home, one of them is in the army.”
📷 VGO Coalition FB page pic.twitter.com/1Q6XkDQrzh
— Inclusion Europe (@InclusionEurope) April 20, 2022
Some activity for children with disabilities restored; Attack on mental health hospital described – 16 April
“White dove, fly into the world. May there be peace in the blue sky.”
“White dove, they say from ancient times, brings peace. What is more precious than peace?” Olena Melnyk from parents-organisation in Lutsk, Western Ukraine, shares an update on Facebook.
At this workshop, children with Down syndrome painted an Easter egg with symbols of peace and Ukraine.
Art therapy, communication, movement – we are happy that we succeeded to distract the children in these difficult times, and improve their mood.
Inclusion Europe contributed to the resumption of classes for people with intellectual disabilities, and the opportunity to purchase materials for the workshop. We also plan to conduct psychological training for children and their parents.”
“Thank you for not killing us” – NY Times report on Russian forces siege of mental health hospital in Borodianka.
- “The siege at the mental health facility dragged on for weeks, during which the building lost heat, water and electricity, and more than a dozen patients lost their lives.
- Shock waves rattled the special-needs home. Some patients became aggressive, and three even escaped and have yet to be found. Others were terrified and curled up under their beds and in their closets. “It was more than 10 times scary,” said Ihor Nikolaenko, a patient.
- First patient died from exposure to the cold in late February. By early March, a half of dozen more passed away. In total, 13.
- It was -7 degrees Celsius inside. There was no heat, no electricity, no running water and little food. “We started drinking water from the pond. We all got sick.”
- They did not allow anyone to leave the compound, even to search for food, and they ringed the building with artillery, mortars and heavy guns, knowing the Ukrainians would be reluctant to hit it. “We became human shields,” said Taisia Tyschkevych, the home’s accountant.”
- Full story in NY Times here.
UN CRPD statement; Update from Ukraine on receiving help – 15 April
“Maxim is happy, he loves new experiences” – from the father of 15-years old boy fleeing from war
“We left Kyiv because we lived in the area where the ministry of defence, and the airport are located. A rocket hit the house next to ours.
We got help from one organisation to get on the train. But I did not have the passport, and birth certificate – they stayed in an apartment, and I could not get there.
We got help with housing in Lviv region. And we were given products and things brought by local people.
We go for walks by the river, the boy is happy because he loves new experiences.
We want to go abroad, but we do not have the original documents. I applied for a passport renewal, but I have to wait a month. There is only a certificate of disability of the child.
In western Ukraine, everyone helps, although stress is still present.”
CRPD Committee issued a statement on the situation of people with disabilities in Ukraine.
Vinnytsia city public organization “Sprout” distributes help provided by Inclusion Europe.
- The organisation, its director writes, “is very grateful to Inclusion Europe and the VGO Coalition for providing material assistance to 35 members of the organization, people with intellectual disabilities.
- In wartime, when everyone feels vulnerable, people with disabilities are in a very difficult situation. Families raising children with intellectual disabilities are simply in despair and hopelessness.
- Any help is a sign of attention, a testimony for people they have not been forgotten.”
- Contribute to Help in Ukraine now.
“Great danger of a new wave of institutionalisations” – 13 April
“The war had demonstrated once more that Ukrainians with intellectual disabilities remain even more discriminated among those discriminated,” says Raisa Kravchenko, commenting the TV program about the situation.
“All day-care services stopped with no substitution to help family care givers. There was lack of personal assistance in the pre-war time already. The care givers (mainly mothers) will not be able to remain in this situation for a long time.
A new wave of institutionalisation is a great danger specifically for persons with intellectual disability.
That is why we appreciate so highly the aid provided by Inclusion Europe and all of its members to the VGO Coalition.”
What support do people with disabilities need? – 12 April
- “Shelters and evacuation routes are largely inaccessible for those with physical constraints and for the deaf and blind, access to information can be difficult.
- Those with cognitive disabilities face similar challenges. Fleeing often means long and treacherous travel, something inconceivable for those with autism or intellectual disabilities. And even if they manage to escape, many find unfamiliar environments, like refugee camps, hard to cope with.”
Milan Šveřepa, director of Inclusion Europe, was one of the guests on the show.
2.7 million people with disabilities in Ukraine are exposed to the horror of war, said Gunta Anča, European Disability Forum.
- Shelters and escape routes are inaccessible for many of them.
- People have to stay in their apartments while being bombed, without care or medication.
- Evacuation transport is unable to take their assistive devices.
- Host countries are not offering accessible accommodation.
People with disabilities are not a niche demographic, we make up 15% of the global population, said Anna Landre, Partnership for disaster inclusive strategies.
- It is really disappointing their needs are not being accommodated, and treated as normal, as common, as part of the human condition.
There are 260,000 people with intellectual disabilities in Ukraine, said Milan Šveřepa.
- Our member in Ukraine, the VGO Coalition, brings together 14,000 families who take care of their relatives with disabilities.
- They cannot go to bomb shelters, as these are inaccessible, or it is hard for many to be in such crowded places.
- They shelter in their bathtubs, basements.
More could have been done to prepare better to support people with disabilities, said Yuliia Sachuk, Fight for rights.
- For example accessibility of bomb shelters.
- Or coordination of volunteers, support groups.
Most humanitarian organisations are acting as if disability was invented the day Ukraine was invaded, said Anna Landre.
- They are not prepared, they don’t have wheelchair-accessible vehicles, they don’t know how to make shelters accessible for people with disabilities.
- 90% of shelters are inaccessible.
At least 30,000 people with disabilities are in “residential care institutions”, said Milan Šveřepa.
- Some of these institutions were evacuated.
- Some were directly attacked by Russian forces.
Many people lack medicines, and this is something the humanitarian organisations should help with and reach out to local disability organisations, said Milan Šveřepa.
- Inclusion Europe can help with financial support, thanks to contributions from our members, and other organisations and individuals.
- This allows families in Ukraine to buy food and other necessities, or to hire someone to provide support for a couple of hours so the family carers can get some rest.
- Many of the family cares are women in their 60s, 70s, who have health issues themselves.
You can watch the full show here:
The story of Tamara and Seraphim – 11 April
“On February 24, 2022, my son Seraphim and I woke up to the sound of explosions. The body was numb with terror, the war sounded in my head – war, war, war has begun. On this day, Sima was supposed to go to swimming competitions, but it did not happen.
It is difficult for my son, who has a Down syndrome, to understand why he does not go to school or see friends now. Why you can’t walk in the yard, why he doesn’t go swimming in the pool anymore, and much more …
He started to cry more often, to get nervous.
We went to spend the night in a shelter. And during the day we tried to distract ourselves with household chores in order to somehow alleviate the pain and get out of shock.
We watched fewer people return to shelter as many left Kyiv, and thought that we should leave home for security too. It tore my heart to pieces.
Thanks to the support of NGO “Family for Persons with Disabilities” we moved to Lviv, where we fell into the caring hands of the NGO Lyarsh-Kovcheg, who actually gave us and her son shelter in the community.
Now we continue to live and work safely. Especially since at this difficult time we received financial support from the VGO Coalition for the Protection of the Rights of Persons with Disabilities due to intellectual disabilities. Thank you for support Amis Dk, Ceva de Spus, Inclusion Europe.”
From VGO Coalition facebook.
Current situation in Ukraine; Call for EU action; Refugees with disabilities – updates on 8 April
Plena inclusión organised a webinar about the situation in Ukraine, and about what organisations in Spain are doing to help (7 April).
Raisa Kravchenko said during the webinar:
- In Mariupol, the leader of the organisation is simply trying to find if people are still alive. Similar in Kharkiv.
- We are worried about what will happen to people. So they will not be abandoned, if their family died for example.
- My son is very agitated by all that is going on. Not just concerned, agitated. It makes the situation very hard. For many families.
- I have bad health myself. When my health gets worse, he is without care. But the family comes together, his sister and father help too. Right now, cousin came to help, so I can be here. We are lucky we have this support group.
- The main needs are material: food, medicines, money… Many people lost jobs, they are without any means to buy basic stuff. We also need money to hire assistants, so the mothers get some help and respite. We need help from social workers, to provide support, connections.
- Leave and be safe abroad, or stay at home in familiar environment, but danger from war. It is a difficult decision for many families with members with disabilities.
- Scroll down to 6 April to read more about Raisa and the situation in Ukraine.
Plena inclusión talked about how they support a boy with autism who arrived from Ukraine.
- They also showed a video of supporting a refugee from another war in Europe.
Milan Šveřepa talked about what Inclusion Europe is doing to help.
You can watch the recording of the webinar (in Spanish):
Joint contribution to Commissioner Dalli meeting with civil society on support to Ukrainians (6 April)
The European Disability Forum, Inclusion Europe, and EASPD have been working closely with organisations of people with disabilities and their support services in Ukraine since the start of the war.
We call on the EU to:
- Ensure the humanitarian response within Ukraine reaches, and is inclusive of people with disabilities.
- Coordinate with member states to ensure the protection and safety of children and adults with disabilities seeking refuge in the EU.
- Provide clear guidance on situation of people with disabilities, and the response to it.
- Plan for the future.
Inclusion Europe members met for an exchange on how support to refugees with intellectual disabilities is provided in different countries (5 April).
- We heard directly from those involved in supporting refugees in Moldova, Romania, Czechia, and Poland.
- Raisa Kravchenko from the VGO Coalition in Ukraine talked about the current needs in the country.
Main take-aways from the call:
- There is need for more cooperation and involvement of state and international humanitarian agencies in supporting people with disabilities. So far, most of the support relies on local disability organisations and NGOs.
- There is a need for better registration of refugees with disabilities, for access to accommodation and public services. In some countries, there are issues recognising disability status, and providing refugees with finances.
- There is a need for providing accommodation and services (including education, employment) for those staying longer-term.
“War ruined everything” – 6 April
“I’m a happy mother of 2 children,” writes Olga on VGO Coalition facebook page.
“The oldest, 13-year-old son Dmytro, has a disability. My younger daughter is only 1 year 3 months. The daughter also has developmental difficulties as she was born very premature. For the first 2 months we just fought for her life and then started working on her diagnoses. Both children need special nutrition, medication, classes with specialists, rehabilitation.
War ruined everything.
Over 10 years we pulled our son out of his own autonomous world and now, he’s back there again. He became very anxious, closed and silent. Watching the news, listening to briefings, installed an app on the phone that alerts air strike alarm so you don’t miss anything.
And the most important and the hardest thing is that he is waiting for his dad who has been fighting since the first minutes of the war, he is very worried and misses him.
We haven’t seen my husband since 5 a.m. February 24. Only God knows if we will see each other at all.”
Olga and her children are now in a safer place, she works as a volunteer.
Katrin Langensiepen MEP talks in the European Parliament about people in disabilities from Ukraine:
— Katrin Langensiepen MEP (@k_langensiepen) April 5, 2022
TIME magazine writes about people with disabilities in Ukraine. The article includes quotes from Raisa Kravchenko (VGO Coalition), and information about Inclusion Europe work to help in Ukraine. Some quotes from the article:
Like many disabled Ukrainians, Herasymova felt excluded from safety and relief efforts designed for the able-bodied population.
- Many disabled Ukrainians are more vulnerable to Russian attack, while also at greater risk of abandonment, violence, and discrimination within their own communities.
- “I had a feeling that in a situation of war, we [the disabled community] would be the first victims,” Sachuk says. “Maybe not directly, but we would become victims because of our disability. We understood clearly that nobody would come and help us in our efforts to survive.”
- Feeling abandoned by both the state and humanitarian aid groups, disabled Ukrainians have urgently mobilized to help their own communities. Drawing on the strength of pre-existing grassroots networks in the country, activists have coordinated with disabled communities abroad at astonishing speed. Already, Fight For Right’s team of 40 volunteers—many of whom are disabled themselves—have helped 400 people flee the country.
Ukrainians with invisible disabilities, like Nikulin, often face even greater levels of misunderstanding and discrimination.
- 61-year-old Raisa Kravchenko was forced to leave Kyiv with her 28-year-old son, who has an intellectual disability, after the start of the Russian attack. They moved to Kravchenko’s home town 60 miles west and have tried to establish a routine to make her son feel comfortable.
- Kravchenko, who has a physical disability herself, had to make the same devastating decision many disabled people and their families were forced to make. She knows her son wouldn’t cope in a refugee camp or in an unfamiliar environment, and she worries she would fall ill if subjected to a long journey out of the country. So, she and her son will stay in Ukraine.
Kravchenko has spent decades improving the lives of disabled Ukrainians and their families.
- Dissatisfied with the state’s preference for caring for people with intellectual disabilities in institutions, Kravchenko founded the VGO Coalition, an alliance of 118 local NGOs with the aim of improving policies and support for the intellectually disabled.
- As leader the local NGO in her area, she successfully lobbied the local authorities in Kyiv to establish a day center for adults with intellectual disabilities. It provided a hub for their guardians—mostly mothers—to meet and share support.
- “We brought up a new generation, a different generation of people with intellectual disabilities with an absolutely different quality of life. They were able to be in the city, to communicate, to do meaningful activities. They had friends, sometimes they fell in love and some of them married.”
- The center was forced to close when war broke out.
The situation is clearly taking its toll on Kravchenko, but she hasn’t stopped trying to help in whatever way she can.
- The VGO Coalition has so far received €20,000 ($22,000) in donations from Inclusion Europe. [Inclusion Europe sent € 160,000 in total by end of March, to VGO Coalition directly, and to its member organisations.]
- Many of the mothers live in rural areas, and don’t have cell phones or bank cards. Yet, word has still spread through the network, and the coalition has distributed the cash through relatives and neighbors.
Read the full article here: Disabled Ukrainians Are Fighting For Survival | Time
Stories from Ukraine; refugees with disabilities in Poland – 2 April
About Sasha and his family:
“My name is Anastasia, I am a mother of four children. My eldest son, Sasha, has autism.
We were forced to leave our home near Kyiv and leave the house with the first explosions early in the morning of February 24. We went immediately to a remote village near Vinnytsia, now we are here. We did not go alone. They took 2 more families under their care, because they had nowhere to go.
Sasha is having a hard time with any change of place. Changing rooms is stressful. And now it’s very noisy, a lot of other people.
But we are all alive and well – this is the most important thing!
We are very grateful to the NGO “Family for Persons with Disabilities” for organizing the assistance. Coalition for the Protection of the Rights of Persons with Disabilities due to Intellectual Disabilities, Amis DK, Ceva de spus, Inclusion Europe – heartfelt thanks.
Now there is no income, this is the only income, and therefore it is priceless!”
(From Facebook post by the VGO Coalition)
The story of Anna Maria:
You cannot prepare for war trials in advance. But the feeling of the inevitability of this horror was there already in late 2021.
Our family is raising a child with a disability. Anna-Maria will turn 15 in a month. She has severe epilepsy, autism, and does not speak.
But there are emotions that we have learned to distinguish and understand, her feelings. She is extremely positive and gentle girl!
Already from Catholic Christmas we carried with us all the documents and a supply of medicine, wherever we went. And it so happened that the war caught us far from home, in the Zhytomyr region. We didn’t go for long, we didn’t take enough things, shoes. But it is good that the stock of medicines we have is for a couple of months!
Our family is extremely grateful to the NGO “Family for People with Disabilities”, the Coalition for the Protection of the Rights of Persons with Disabilities due to intellectual disabilities, all volunteers and caring people for financial support in such a difficult time.
We lost our job, income and ability to provide Anna-Maria with medicine. Receiving charitable help helps us a lot to provide our family with the necessary things and products. Thank you to everyone involved!
(From Facebook post by the VGO Coalition)
Ukrainian refugees with disabilities in Poland, an article in Rzeczpospolita:
- To receive a disability certificate in PL, you must collect full medical documentation.
- People with disabilities usually come to PL without medical records.
- If a child goes to a school and educational center, a diagnosis for educational purposes is quickly organized.
- It is more difficult in nursing homes. Directors agree to accept the disabled for a few days, because then it is not known who will pay for their stay.
- Poland lacks legal and systemic solutions.
- Adults with disabilities are encouraged to go to Denmark. There, a law was adopted that allowed at the outset to make a diagnosis and immediately provide support tailored to the disability.
1. Call on Russia to stop the war! This is the only way to prevent further harm and suffering.
- Write to your governments to do all they can to stop the war, and to protect Ukrainian people.
- Consider joining local protests against the Russian war.
- Summary of what the war means for people with disabilities and families in Ukraine.
2. Talk to governments and to humanitarian organisations to explain people with disabilities and families must be a central focus of all humanitarian action.
- The VGO Coalition alone is 14,000 families of people with disabilities. They need help with daily supplies, medicines, shelters, hygiene products.
- There are at least 100,000 people in care homes / institutions in Ukraine; 80,000+ children, thousands of adults with disabilities. Aid must try and reach them to see in what situation they are. There is great risk of them being abandoned, harmed by military action.
- 10% of refugees, in and outside of Ukraine, are estimated to have disabilities. Organisations helping them need urgent support.
- “NGOs are at the forefront providing support to refugees with disabilities,” organisations in Moldova, Poland, Romania, Czechia tell us
- Report: One month of the war in the words of families
- Press conference: “Weeks of horror. And we cannot possibly escape.”
- News 15-31 March
- News 22 February – 10 March
- Donate to help in Ukraine
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