People with intellectual disabilities and families in Ukraine affected by Russian war - updates

This is the second post with updates as situation develops. Previous post from 22 February to 10 March.

“And you don’t know what to do…” – 29 March

This is the story of Cyril, whose family is forced to stay in Kyiv: Cyril looks at a phone

“Cyril doesn’t talk… He finds cartoons, and makes the phrase from the cartoon: “HELP”. It goes on for hours.

Cyril has autism and epilepsy. Epilepsy attacks are becoming more frequent…

His mother says: “What is war for us? It is the complete destruction of our lives. Both physical and moral. It is the destruction of our home. It is very scary. It’s scary when rockets are flying right over your head, and you see and hear them. And you don’t know if they will fly, or fall right into your house. It’s very scary when the shells explode next to you. Something is on fire. Very scary when you see a helicopter…, and then shots fired… and a little later, cannons again… This is scary. And you don’t know if it will be morning or not. And you practically don’t sleep…

And it’s even scary when you see your old mom going crazy with those shots, rockets… And you don’t know what to do…”

We must not forget people with disabilities in Ukraine, writes Helen Portal in Euractiv.

People need help, and they need it now.
Read Helen’s article here.

Key issues to focus on:

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.

More details, resources here – Page about Ukraine

One month – 26 March

24 March marked one month since Russia launched its war on Ukraine.

Mothers of daughters and sons with intellectual disabilities tell what this time has been like for them.

“Families are afraid to leave children and old people to go outside for food and necessary medicines. The situation in families is alarming. Children with autism become aggressive. Children with Down syndrome fell into a deep depression.”
Read the report here.

The Ukrainian Coalition shares a message of thanks to everyone for your help:

“Exactly one month Ukrainians have been suffering from the war started by Russia.

For exactly a month, Ukrainians with intellectual disabilities have been going through terrible times together with the whole country.
Lack of services, lack of access to medicines, often a complete misunderstanding of the situation and, consequently, the dangers.

But for much longer than a month, we feel support and help from our European partners and friends! It is extremely important to feel that we are not alone in terrible trouble.

Many thanks to the team of Inclusion Europe, who in a short time launched a powerful campaign to inform and raise financial aid. The Coalition and its member organizations received 160,000 euros in four weeks! The Coalition has already provided one-time assistance to more than 500 families caring for people with intellectual disabilities!
Our Lithuanian friends Viltis and Dana Migaliova provided huge moral, financial and humanitarian support. The Viltis team is once again sending help to families from Ukraine (food, hygiene, clothing, medicine and many other necessary things at this difficult time)!
Our new Romanian friend Zoltán Szövérdfi-Szép, Ceva de spus: You are doing an incredible job! Financial and humanitarian support from your organization has been useful for more than 70 families!
We can’t help but remember our tireless girls, without whom it would not be impossible to deliver humanitarian aid from partners, they also collect humanitarian aid, prepare, organize shipments throughout Ukraine!”

Yaryk from Volyn, drawing of a rainbow, heart, sun, and the flag of Ukraine

Inclusion Europe was able to provide Ukrainian families of people with intellectual disabilities with 160,000 euros during the first four weeks of the war.

This sum helps some 1,200 families with one-off contribution, so they can buy food, medicines, or anything else they need in their situation.
This is possible thanks to generous donations from individuals, and from organisations, including many of our members.
Thank you!

Message from our president @JyrkiPinomaa:
Thank you all for your solidarity with Ukraine! pic.twitter.com/SdhQJ1QY4z

— Inclusion Europe (@InclusionEurope) March 18, 2022

Self-advocates from Wales recorded and shared this message for people in Ukraine:

“All of you in Ukraine – we are thinking of you.
You’ve got all our support.
We hope the war will be over soon.

I hope there’s plenty of generous people helping you.

We stand with Ukraine!”@AllWalesPF send support to Ukraine 🏴󠁧󠁢󠁷󠁬󠁳󠁿
💙💛 pic.twitter.com/WwNWlo3dSG

— Inclusion Europe (@InclusionEurope) March 23, 2022

EU support to help Member States meet the needs of refugees – 23 March

The European Commission presented actions to support EU member states in meeting the needs of refugees from Ukraine. Excerpts:

3.5 million people – mainly women and children – have arrived in the EU in the space of four weeks.
6.5 million people are estimated to be displaced internally.

The available support includes:

Protection for children:

Children need to be guaranteed swift access to their rights, without discrimination. Their registration upon entry into the EU is key.
National coordinators now in place under the European Child Guarantee have a key role.
Specific focus is given to children from institutions (such as orphanages), and children at risk of trafficking and abduction.

Access to education:

The Commission will bring together Member States to start sharing experiences and identify what is needed to continue the education of displaced children.
The School Education Gateway will serve as a one-stop shop to link to educational material from Ukraine and Member States’ material in the Ukrainian language.
Flexibility in the Erasmus+ funding programme will also be used to support the education of refugee students and the integration of staff of higher education institutions who are fleeing the war.

Access to healthcare:

People in urgent need of specialised hospital treatment can be quickly transferred between Member States.
10,000 beds already available.
The Commission will take targeted actions on mental health and trauma support for those fleeing the war, including the set-up of a network of Ukrainian-speaking mental health professionals.

Access to jobs:

Commission initiatives include developing new guidelines to facilitate recognition of professional qualifications obtained in Ukraine and working with social partners to help inform the private sector about the rights under temporary protection and the programmes available.

Access to accommodation and housing:

To meet immediate needs for suitable accommodation, a new “safe homes” initiative will support Europeans who are making their homes available, mobilising targeted funding and online resources as needed.
Asylum, Migration and Integration Fund, as well as Cohesion Policy funds, will be mobilised to strengthen public reception systems.
In the longer term, the European Regional Development Fund helps to provide social housing for families and individuals in the community, and the Fund can cover both the purchase and refurbishment of accommodation.
The European Social Fund can support community-based services and accommodation, especially for those with special needs, disabilities, children and older people.

Full version of the announcement here.

“Parents are with their children constantly, even queuing for food” – 22 March

Lives of children and youth with disabilities during the occupation of Kherson, from the “Mother’s Heart” organisation:

“Children are currently unable to attend “Mother’s Heart”, so together with their parents they try to practice at home.
Sasha writes recipes, Toma draws pictures, and Tanya and Dima walk the dog .

It was difficult for our members in peacetime, and now it is even more difficult.

Some children are in serious condition, they can not be left for a long time.
Some parents are with their children constantly, even queuing for food for about 3-4 hours.”

Message from Mariupol

“All the money I received from Inclusion Europe was transferred to families with children (small or adults) with intellectual disabilities.

Thanks to your efforts, 48 families received assistance.
They thank you from the bottom of their hearts.

Helping with money is very important, because the prices of food and medicine are rising.

Most of the population does not work, because rocket attacks continue, and public transport does not work.
The city’s infrastructure is almost destroyed.
Almost 1,000 homes were damaged by shelling.

Volunteers and the city council primarily help the army, hospitals, people left homeless, and the elderly.

So your support is very important.”

“Does war hurt?” – 21 March

Disability Debrief: on the War in Ukraine provides a very comprehensive summary of the situation in Ukraine.

Disabled people are hiding in their bathtubs because they cannot get to the shelters. Institutions of disabled people are being bombed and families are struggling to survive and unable to leave. In the words of one leader in the Ukrainian disability movement, we’re “easier to kill”.
Volunteers, civil-society organisations and existing and ad-hoc networks are being leveraged to support persons with disabilities still in Ukraine, those leaving, and people after arrival. You will notice that this list does not include the names of established humanitarian organisations. They have received scathing criticism for inaction and discrimination from the people who are working so hard to respond.
Disability Debrief: on the War in Ukraine

BBC Radio Scotland interviews Jan Savage (ENABLE Scotland) and Milan Šveřepa about people with intellectual disabilities and their families in Ukraine.

Listen here (segment starts 29:30).
To read the opening testimony from a mother of 9-year-old boy with autism, scroll down on this page to a post from 16 March.

Mother of an adult daughter with intellectual disabilities writes:

Today my Olya asked: Tonya, why are you crying?
I wiped my tears: Sun, there is a war on the street.
She asked again: Does war hurt?
I had no answer! Lord, have mercy on us, may peace come!
Olya immediately drew few pictures for me: Come on, mom, it’s you, don’t cry.

Support provided in Lviv by local organisation – 19 March

NGO “Nadiya” continues to support families of children and young people with intellectual disabilities in Lviv (West of Ukraine), VGO Coalition writes:

Most families stay at home.
There have been shelling in the city and there are constant air alarms.

Despite their own shock, feelings of helplessness, fear for themselves and their relatives, some families found strength and welcomed people from Kyiv and Odesa.

The organization’s team works remotely (by phone, in messenger groups), and from March 14 in the organization’s premises if possible.

Workers go to work with their children.

Some of the work being done:

The needs of each family of the organization are monitored.
Employees volunteered to sew towels from the remaining materials for people in the community in need.
Humanitarian aid (cloths, shoes) has been launched with the support of the Berehynia Charitable Foundation.
Negotiations are underway with volunteers from Lviv to provide diapers for adults.
Received a “Rapid support of the capacity of civil society in Ukraine to act in emergencies” grant from Isar Unity.

The day care program has not yet been resumed due to frequent air raid alarms, to avoid danger to children and young people with intellectual disabilities.

The team of the NGO “Nadiya” says: “We pray! We believe!”

“All is being ruined. We will be overcoming this for years.”

Raisa Kravchenko gave an update on situation in Ukraine at a webinar organised by Learning Disability Nursing Forum Friday 18 March:

Many families cannot evacuate. Evacuation from Mariupol is possible only in an own car. Our colleague and her family have their car damaged by a bomb; they are in a basement, waiting…
2 residential institutions were bombed. The one in Kyiv was evacuated before being hit. 300 residents were evacuated into a psychiatric hospital with 700 people already. Can you imagine?
Already before the war, there was a big problem with access to support. Now it is very very difficult to get any support. Personal assistants are needed.
After 3 weeks we are “getting used” to this. We are out of the initial shock. We start to think about how we can work in new ways, to let the people know about what is happening. All is being ruined. We will be overcoming this for years.
People with intellectual disabilities are never a priority. There is never a systemic response. We fear this will reinforce institutionalisation of children and adults.
Many people with intellectual disabilities could remain without care. We rely on your help to make sure they have support. (It was already effect of Covid pandemic; as carers died, people were left without support)
We are so impressed and grateful with the solidarity. Being together is essential for the response to what is happening.

Jan Savage from ENABLE Scotland spoke about the support being organised by organisations in the UK:

The war in Ukraine is truly dreadful for all citizens, but there are specific challenges for people with learning disabilities.
We are raising awareness about their situation and needs, to make sure the relevant agencies’ response takes this into account.
UK charities’ joint contribution to help in Ukraine was announced later on Friday.

Milan Šveřepa spoke at the webinar about the situation in Ukraine, about the numbers and needs of refugees with disabilities in Ukraine and in the EU, and about what Inclusion Europe is doing to help.

Thank you all for your solidarity with Ukraine – 18 March

Message from our president Jyrki Pinomaa:

Inclusion Europe started a special fundraising campaign to help people with intellectual disabilities and their families in Ukraine.

I wish to thank you all – private persons, associations and organisations, entrepreneurs, companies – who have supported our campaign with your generous donations, and in many different ways expressed support to people in Ukraine.

I also wish to thank all who have been able to give direct help to people in Ukraine, and you who have helped Ukrainian refugees on their painfully heavy journey away from the war.

Thank you all for your solidarity towards Ukraine!

My thoughts are with our friends Raisa, Yulia, Olena, and many others with their families, and with all people in Ukraine.

We will meet someday again!

Information for refugees in the EU – 17 March

Here is the key information about Ukrainian refugees’ rights with regard to crossing the border into an EU country, eligibility for temporary protection and applying for international protection, as well as the rights of travel inside the European Union.

If you were permanently residing in Ukraine, and you left the country to escape war from 24 February 2022 on, you may be entitled to temporary protection in any EU country.

Temporary protection will last for at least one year, this may be extended depending on the situation in Ukraine.
Rights under the Temporary Protection Directive include a residence permit, access to the labour market and housing, medical assistance, and access to education for children.

Information for people fleeing the war in Ukraine | European Commission

In German, report and interview in Austrian TV:

“War is scary” – 16 March

This is a personal testimony of one family from Ukraine:

“War is scary, especially when you have children. And especially children who find it difficult to understand something. My son is 9 years old, and has autism.

With the start of the war, we moved to another area, a city close to the border, but it did not last long, only 5 days.

My son was always nervous, resolving to dissatisfied kicking. The neighbours often complained about the noise. Any walk was accompanied by screaming, crying, the child’s lips trembled and his face lost colour.

When we left the apartment, we had to take out all our belongings, he ran and packed his bags, anxiously inspected whether we had forgotten anything. Eventually we returned home, I felt calmer and so did my son.

But the sirens and the basement became the next problem. Dragging him there was not easy, he did not understand why we were there and what was happening.

Then we decided to live improve it a bit in our basement, brought some things, goodies. Everything seemed to be fine, because the time in the basement lasted up to an hour. But later we had to stay there until 6 o’clock, we can’t get used to it.

We also have a curfew and at 20.00 the light should go out. This has become another problem for the child he can not understand. Because when you turn off the light, you need to sleep, and his biological clock says it’s not time. We are faced with self-aggression, he began to bite his hands and cry, lying on the ground. There was no way of a hug, the child did not want it categorically.

There was little light from the TV and nightlights and then we lit candles. For now, it’s calm.

I believe that everything will end soon, but my son has autism, and some things will become a habit for him. For example, we had dinner in the basement several times, and now he takes his dinner and demands to go downstairs, even if the sirens are not on.

He sleeps in his clothes, because that way we can get to the cold basement faster, and we have been used to pyjamas for so long.

I don’t know what picture he draws in his head, what he feels, but the fact is that the child has been living in stress lately. But the most important thing is that we have this house. We pray and ask God to keep our house alive.”

This testimony is from VGO Coalitoin facebook.

Persons with disabilities in Ukraine face a ‘crisis within a crisis’ – 15 March

Civil society calls on the EU, national governments and humanitarian organisations to step up efforts to protect Ukraine’s 2.7 million persons with disabilities who risk abandonment, death or a lack of shelter amid Russia’s invasion.

Urgent and concrete action is needed to guarantee disabled people access to essential services.
Persons with disabilities are often unable to get to safety without support or to access relevant information.
People living in care institutions have in many cases been left without support, and some of the institutions “have run out of basic things such as food, water, medication, and fuel for heating”.

People with intellectual disabilities and families in Ukraine affected by Russian war – updates