The war against Ukraine is severely impacting the support for disabled children. Investigative reports by Disability Rights International reveal atrocious conditions disabled children live under in Ukraine´s institutions and highlight the urgent need for deinstitutionalisation.
Russia´s war against Ukraine has triggered a disastrous humanitarian crisis. Since Russia´s army began invading Ukraine on February 24, at least 6.731 civilians have 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 are in need of humanitarian assistance.
The international community is reacting by mobilising humanitarian support. Since February 24, USAID has provided USD 688 million to Ukraine. The EU is providing large sums of financial support as well. The European Commission has mobilised EUR 230 million in humanitarian aid for Ukraine. EU-member states together are providing EUR 950 million.
Do disabled children benefit from the money? As pointed out by the European Disability Forum and the European Council of Autistic People, in a war situation disabled children are one of the most vulnerable groups. There is a high risk of disabled children being abandoned by their care givers and being overlooked by international aid efforts.
Overlooked by international aid
Apparently, that is exactly what is happening in Ukraine. A recent report by Disability Rights International (DRI) reveals that no targeted outreach to more severely disabled children in institutions has taken place. According to DRI investigators, disabled children with the greatest support needs have so far been entirely overlooked by major international relief agencies and are receiving little support from abroad.
Disability support in times of war
In late April 2022, DRI brought a team of experts to Ukraine on a fact finding mission to visit Ukraine´s institutions. The DRI team visited four institutions for disabled children. All institutions were heavily affected by drastic increases in children entrusted to their care due to hectic evacuations of institutions close to the frontlines. According to DRI, institution #1 received 22 additional children, institution #2 had to accommodate 38 new children and adults, while institution #4, a home for baby orphans, received 35 new children as a result of the war. For many institutions, this meant staff were required to take care of nearly 50% more children.
At the same time, institutions have to cope with reduced resources due to budget cuts. With staff having to be laid off, fleeing the country or joining the army, the number of personnel available has decreased sharply.
Left behind and abandoned
According to the DRI expert team, the practice of evacuating children from the east and leaving them in the hands of overwhelmed institutions in western Ukraine applies mainly to severely disabled children. Children with milder disabilities are being evacuated from Ukraine to other European countries, like Poland, Italy and Germany. When disabled children are being evacuated from institutions in eastern Ukraine to the safer western parts of the country, they are usually accompanied by their care assistants. However, the staff from the evacuated institutions rarely stays to help: “The staff from the institution in the east dropped of the kids – and left here like rats from a sinking ship” (Director Institution #1).
A recent UNICEF report details evacuations from facilities under the Ukrainian Ministries of Health and Education. Institutions governed by the Ministry of Social Policy, in charge of institutions for children with higher support needs, are not mentioned. “The children with the most difficult problems from two institutions came here. … The children most able to move went abroad” (director Institution #2).
Living in atrocious conditions
A DRI report from 2015 detailed the disastrous conditions in Ukraine´s institutions long before the beginning of the war. The new report indicates that since the start of the invasion, the situation has deteriorated further. The increased number of children in the institutions of western Ukraine together with the reductions of resources have had severe consequences:
- Children living in their own filth: According to investigators, in institution #1 there was one staff member on duty to care for 14 girls at the time of the visit. In institution #3, two staff were on duty for two rooms of 14 children. Due to various reasons, many of the children are unable to use toilets. The fact finding team found evidence that staff is not keeping up with changing diapers. The children´s rooms in all institutions were filled by strong smells of urine and feces, according to investigators.
- Denial of medical treatment: In the four institutions that were visited, DRI investigators discovered children with chronic medical conditions that did not receive adequate treatment. The disability experts documented their visit by video. As this documenting video reveals (see here), the DRI-team found a young boy with untreated hydrocephalus. As explained by the university hospital Dresden, Hydrocephalus is a condition involving an accumulation of cerebrospinal fluid within the brain. If left untreated, hydrocephalus is likely to lead to an early death. 80% of individuals with hydrocephalus die before reaching adulthood. Since effective treatment has been around for several decades, the fact that the boy in the institution was not receiving medical attention shocked the DRI experts. The quote “I have not seen a case of untreated hydrocephalus since the 1970s” is clearly audible in the video.
- Another example discussed in both the DRI report and the video is the case of a 14 year old girl with scoliosis kyphosis, a form of spinal deformity. The girl appeared to be severely malnourished and suffering from extremely severe contractions. During the whole 30 minutes of the visit, the DRI team witnessed the girl crying severely from pain. When moved around in her bed, she appeared to be as stiff as a board. According to the staff, the girl was not receiving any pain medication or muscle relaxants. The nurses seemed to be unaware of her pain.
- Conditions caused or made worse by institutionalisation: The DRI investigators discovered the main priority of all four institutions was to control the children. Staff was witnessed many times discouraging the children from walking around and playing. Nurses appeared to focus on keeping the children immobile and in their beds. When a child tried to leave its bed, a staff member would turn up and put it back in. As the team entered a girl´s room in institution #1, it found 14 teenage girls all in bed mid-afternoon. The room was so filled with beds it was impossible to do anything except lying or sitting in bed. Some children and adolescents were physically restrained from leaving their beds because they were tied up.
- According to the DRI-report, living under such conditions can cause long term impairments in children. For example, arms and legs might atrophy over time. Indeed, the investigators encountered children with unnaturally tin arms and legs. A group of children evacuated from an institution in Donetsk appeared to be 4 to 6 years old even though they are teenagers. Children across all three institutions are reported to be underweight or physically underdeveloped. Further possible consequences of permanent inactivity are skin breakdowns which can cause bed sores that can lead to bone infections and general sepsis. It can also lead to poor digestion, constipation, bowel obstruction and early death.
- Across all institutions visited, the team encountered children that were self-stimulating by rocking back and forth or showing signs of self abuse. Some children were reported to hit themselves, biting fingers or intentionally inducing vomiting. Many children were also just laying quietly in bed. According to the DRI report, these are strong signs of emotional neglect. Staff seemed to be unaware of the children´s emotional needs. Care activities were resigned to feeding the children and keeping the buildings clean. The DRI-team found little attention or care was dedicated to the children themselves. According to the DRI-report, using restrains as a counter strategy to self-abusive behaviour is dangerous since it causes psychological damage that will lead to more self-abuse. The better counter strategy is to give emotional care to the child. Unfortunately, all institutions visited lacked all possibilities to provide more than minimal support like cleaning and feeding the children.
Institutions in Ukraine: No place for children
Already in 2015, DRI published the report No way home: The exploitation and abuse in Ukraines´ orphanages. The three year investigation the report was based on, revealed all the shortcomings identified again in the April 2022 fact finding mission. It was found children in Ukraine´s institutions live segregated from society and grow up in bleak facilities without the opportunity to form emotional connections, subject to chronic neglect and abuse. That disabled children are kept in widespread inactivity was discovered too. Also identified were the denial of essential treatment for life-threatening conditions, evidence of forced labour, as well as widespread bullying, sexual violence, disappearances and human trafficking. Almost all untreated health conditions encountered in the fact finding mission develop over a longer period of time and must therefore have been caused by conditions long predating the war.
Government policies
Ukraine has ratified the UN Convention on the Rights of Persons with Disabilities (CRPD). After the DRI report from 2015, the Ukrainian government initiated reforms of orphanages and institutions for children. According to DRI, in some areas respectable progress was achieved. However, in 2021, it was decided to exclude disabled children from deinstitutionalization. Ukraine decided to maintain an institutionalization policy that has been rejected since the beginning of the 19th century. At age four, children are evaluated by a “defectologist” and placed into four categories. Children with level one disabilities are placed in Ministry of Education boarding schools. Children with disabilities of level two or higher are considered uneducable and placed in Ministry of Social Policy institutions.
What can the EU do?
The European Commission has mobilised EUR 230 million in humanitarian aid for Ukraine. EU-member states together are providing EUR 950 million. Recently it was decided to provide EUR 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 not only in the short term but once and for all.
On the 18th of May the president of the European Commission proposed to combine monetary support to Ukraine with reforms. This principle should be applied to support for 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 deinstitutionalization plans, also severely disabled children. Community-based support services in line with 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 organization Rodyna is an example. Founded in 2000 by families of children with developmental disabilities the NGO runs a center for social services. An important barrier for the organisations to expand their services is the access to resources. The EUs humanitarian aid efforts should be guided by the “The money follows the child” principle to ensure community-based support services benefit, not institutions.
