The war against Ukraine and homemade policy decisions are causing disastrous conditions for disabled children living in institutions. The EU should ensure its humanitarian aid involves this vulnerable group while also supporting community-based disability support, writes Florian Sanden.
Florian Sanden is policy coordinator at the European Network on Independent Living.
Russia´s war against Ukraine has triggered a disastrous humanitarian crisis. Since Russia´s army began invading Ukraine on 24 February, at least 7,964 civilians have been injured or lost their lives, according to the United Nations Office for the Coordination of Humanitarian Affairs (OCHA).
In its latest situation report, OCHA estimated that 15.7 million people in Ukraine require humanitarian assistance.
Since the very beginning of the war, European level disability NGOs have been warning that disabled people and disabled children, in particular, are at risk and that “in any situation of crisis or conflict, persons with disabilities face a disproportionate risk of abandonment, violence, death, and a lack of access to safety, relief, and recovery support.”
This is particularly true for disabled people living in institutions who are already cut off from their communities and are likely to be abandoned and forgotten. In Ukraine, 82,000 disabled children live in institutions.
Recently evidence has appeared indicating that the concerns of disability NGOs were justified.
In late April, Disability Rights International led a fact-finding mission to Ukraine to investigate the effects of the war on disabled children in institutions. It found that institutions for disabled children are overwhelmed by hectic evacuations from facilities close to the frontlines.
They found children living in overcrowded, closely packed rooms filled with strong smells of urine and faeces and encountered children with untreated severe medical conditions like Hydrocephalus which leads to fatalities in 80% of cases.
They also met children that were physically underdeveloped due to enforced inactivity and showing signs of emotional abuse and neglect.
Aren’t these war-related consequences, one might ask? Definitely not: The untreated medical conditions or signs of underdevelopment are impairments that form over long periods.
In 2015, the DRI report No way home: The exploitation and abuse in Ukraines´ orphanages found children in Ukraine´s institutions were subject to chronic neglect and abuse. The atrocious conditions in Ukraine´s institutions are a homemade and long term problem.
Since it is a party to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), Ukraine started a process of deinstitutionalisation and achieved some progress. However, in 2021, it was decided to exclude severely disabled children from deinstitutionalisation.
What can the EU do?
The European Commission has mobilised €230 million in humanitarian aid for Ukraine. EU-member states together are providing €950 million. Recently it was decided to provide €9 billion budgetary support to the Ukrainian government.
These resources provide an excellent window of importunity to improve the lives of thousands of disabled children in Ukraine in the short term and once and for all.
On 18 May, the president of the European Commission proposed to combine monetary support to Ukraine with reforms. This principle should be applied to support disabled children in institutions.
First, the EU needs to ensure disabled children benefit from the humanitarian aid provided to Ukraine. The immediate health and safety risks of disabled children in institutions need to be addressed.
Humanitarian aid needs to provide all medications and treatments required so that untreated medical conditions become a thing of the past. Many children might require physical therapy and psychological support.
Second, the EU should work with the Ukrainian government to allow severely disabled children to be evacuated abroad for the duration of the war.
More importantly, the EU and other actors should use the window of opportunity to support a broader policy change in Ukraine.
The Ukrainian government needs to finally include all disabled children in its deinstitutionalisation plans, also severely disabled children. Community-based support services, in line with the UNCRPD and General Comment No. 5, provide disability support, making institutions obsolete.
Organisations standing ready to provide such social services already exist throughout Ukraine. The organisation Rodyna is an example.
Founded in 2000 by families of children with developmental disabilities, the NGO runs a centre for social services. A significant barrier for organisations to expand their services is the access to resources.
The EU’s humanitarian aid efforts should be guided by the “money follows the child” principle to ensure community-based support services benefit, not institutions.