International Day of Persons with Disabilities

Cribs lined up along the walls of a small room in a baby institution in Ukraine

On International Day of Persons with Disabilities, Nolan Quigley, our Director of Global Advocacy shares his reflections on the impact of the war in Ukraine war on children with disabilities and on their institutionalisation. 

3rd December marks International Day of Persons with Disabilities, a day to promote a deeper understanding and awareness of the rights of children and adults with disabilities.  

Human rights are universal but the human experience is not universal. At Hope and Homes for Children, we know that around the world, children with disabilities are disproportionally placed in institutions. Even in countries that have reduced the number of children in institutions, children with disabilities often remain institutionalised or get left behind in an incomplete care reform process that sees other children return to family care.

Children with disabilities are separated from their families due to a range of factors, like discrimination, social exclusion and the lack of available support. Once institutionalised, they are at higher risk of violence, neglect and poor health than their peers. 

On this day, we’re shining a spotlight on children with disabilities in orphanages in Ukraine and the impact of the conflict.

Before the invasion of Ukraine in February 2022, Ukraine had the highest number of institutionalised children in Europe, with more than 90,000 children in institutions, nearly half of whom were children with disabilities (1).

A ‘system of myth diagnosis’ 

Hope and Homes for Children’s research into baby homes in Ukraine in 2020 described a ‘system of myth diagnosis’. Orphanages need to house more children in order to continue to perpetuate their existence, so, children were diagnosed with more serious conditions than they had and placed in institutions. This is one of the root causes fuelling the systematic recruitment of children into institutions. This is due to a still prevalent ‘medical model’ that looks at disability as a medical ‘issue’ that should be treated. The alternative and prevailing social and human rights model of disability focuses instead on removing barriers in society to help children with disabilities thrive.

For example, our research found that almost 70% of children in baby homes were somatically/neurologically healthy and only had developmental delay due to the deprivation they experience within the institutions. Healthy babies were being given up by their families and put at risk in orphanages, deprived of their liberty. If universal or specialised health and therapy services had been available within their communities, families could have remained together, with better outcomes for every child. 

There is absolutely nothing in our village or in the rayon [district] centre – no specialists, no special classes or groups. It is virtually impossible to find a speech therapist or neurologist. You have to travel to the oblast [region] centre but this is quite expensive. Mothers have to lift children and they grow heavier. We need just minimum services – at least some small support centre in the rayon.

Mother of a child with a disability, during our research in 2020.  

An already serious situation for children with disabilities has significantly worsened since the February invasion. 

At a UN event in August 2022, UNICEF testified that there was evidence that children in institutions were being abandoned and neglected and that some children have starved to death without support (2).

Disability Rights International documented that children with disabilities had been moved from orphanages in the east, then placed in the now crowded and overwhelmed facilities in the west of the country, without sufficient staff or training for their needs. 3

A joint UNCRC and UNCRPD report (4) in October 2022 underlined that children with disabilities are:

severely adversely affected by institutionalisation” and, since the escalation of violence, are in “overcrowded and understaffed facilities that cannot provide children with adequate care and expose them to a high risk of harm.

What’s more, due to the conflict, many children have been moved elsewhere, sometimes back to their families without support, sometimes to other institutions. It is particularly challenging to get accurate numbers and information about children with disabilities that remain within the institutional system or about those sent back to families. We have joined the international community in calling for a more robust data system to track children. 

Reflections from our team 

At Hope and Homes for Children, we have a firm belief: families, never orphanages.  

Halyna Postoliuk, our Country Director at Hope and Homes for Children Ukraine, was in Brussels this week, attending a roundtable on Ukrainian children with disabilities in Europe, a workshop on deinstitutionalisation for children with disabilities and various other events highlighting disability rights in Ukraine.  

She reflected: 

“We need concerted mobilisation, including financial support and humanitarian aid, from the international community to help the development of emergency foster care alternatives for children with disabilities. Many of these children have faced horrific and traumatic life experiences, during the war and before. They can only recover and hope for a better future if their right to grow up in a safe family environment is upheld.” 

Pete Garratt, our Director of Global Programmes, also visited Ukraine a few weeks ago and met a foster parent supporting children with disabilities in Ukraine and shared his impressions: 

 

What next? 

Long term, we are calling for everybody with an eye on the future reconstruction of Ukraine to support Ukrainians to build a better future for all of their children. Reconstruction aid must not be used to rebuild the old failed system but instead be channelled into a reformed system that strengthens the resilience of communities and puts family care at its heart – family care for all children.  

Hope and Homes for Children is calling for care reform to be a clear condition of Ukraine becoming an EU member state and for this to be matched by significant EU financial support and advice. We are calling for the UK to put care reform on the agenda of the international Ukraine Recovery Conference that it is hosting next June – ensuring that any money pledged for Ukraine includes a significant pot allocated to support care reform for all children.  

Right now, as winter grips Ukraine, more needs to be done to understand the immediate humanitarian needs of its vulnerable children and particularly its children with disabilities – across the whole country. The establishment of a complete information management system, allowing the government and humanitarian agencies to track children deprived of family care and monitor their safety, well-being and needs, has never been more urgent. 

Children flourish when they have the love and care a family can provide. By providing families with the proper financial and emotional support they need, we can ensure that children with disabilities do not end up in dangerous orphanages. 

Author: Nolan Quigley