Why deinstitutionalisation in Ukraine is now more urgent than ever

It has now been 1.5 years since I took on the role as director of SOFT tulip.

I arrived during a turbulent period: the war in Ukraine was at its height, the need was great, and the demand for good care and support was (and still is today) increasing by the day. Over these 1.5 years, I have learned a lot about where Ukraine stands when it comes to the rights of people with disabilities, and about why our work is now more important than ever.

Miles covered, miles to go

In recent decades, important steps have been taken regarding the rights of people with disabilities in Ukraine. Nevertheless, the road to an inclusive society remains long. Ukraine has an estimated 2.7 million residents with a disability. A significant portion of them still lives in large-scale, closed institutions. In 2021, over 230,000 people received inpatient psychiatric care, and more than 43,000 people resided in 282 residential institutions, including facilities for people with intellectual disabilities and the elderly. Many of these buildings date back to the 1930s through 1970s of the previous century and sometimes house more than three hundred people at once.

For children, the picture is even more poignant. Just before the full-scale Russian invasion of 2022, over 105,000 children resided in residential institutions, more than anywhere else in Europe. As of the third quarter of 2025, 82,599 children were still studying or residing in institutional facilities across Ukraine, including educational, healthcare, and social protection facilities. In total, 683 such institutions remain across the country, including private ones. Among the children in these facilities, 14,631 are children with disabilities.

Ukraine continues to have one of the highest rates of children in institutional care in Europe: between 573 and 694 per 100,000 children, compared to a European average of 277 and a global average of 102 (UNICEF, 2024). This is more than twice the European average and nearly seven times the global average.

By comparison, in the Netherlands, although this number is also not low at around 420 per 100,000 children, it almost always concerns small-scale youth care services and foster families close to home, rather than the large-scale, closed institutions that remain prevalent in Ukraine.

Large-scale institutions are not only inhumane; they also run directly counter to the European human rights agenda, in which the right to independent living and full participation in society (enshrined in the UN Convention on the Rights of Persons with Disabilities) occupies a central place.

Echoes of the Soviet past

To understand these figures, we must go back in time. During the Soviet era, parents of a child born with a visible disability were often advised by doctors right in the hospital to give up the child; ‘in the interest of both child and family’. Children who grew up in a home were brought before a medical-pedagogical commission around their 4th year of life. This commission assessed whether a child was ‘educable’ or ‘uneducable’. Those deemed incapable of learning disappeared into institutions far from family and community, unfortunately often for the rest of their lives.

That system, stemming from the Soviet ideal that valued citizens strictly by their capacity to engage in productive labor and serve the collective state, separated families for generations and made people with disabilities invisible in society. A future you would not wish upon any child, and its traces are still felt today. They can be seen in the institutional care system, in persistent societal attitudes, and in the lack of accessible local care.

War makes the need more urgent

On top of this Soviet legacy comes the war. Since the full-scale invasion of February 2022, tens of thousands of civilians have been killed or injured, over 3.7 million people are internally displaced, and nearly 5.9 million Ukrainians have fled abroad. Ongoing missile and drone attacks mean that families sometimes only have electricity for a few hours a day. Men are at the front, and women are often left alone with the full care for the children, for parents, and/or for family members with a disability. Without a partner, often without power, and without the usual community support. Precisely for this reason, it is now more urgent than ever that parents and caregivers receive the right guidance to let their child grow up, as far as possible in wartime, in an environment that is as safe and stable as possible: within the family, and not in an institution.

Deinstitutionalisation: what does that actually mean?

Now that Ukraine is going through the EU accession process, ‘deinstitutionalisation’ is high on the agenda. But what does the term ‘deinstitutionalisation’ actually mean?

Deinstitutionalisation is not simply about closing institutions. It is about building an entirely different system: family support so that children can grow up with their parents, foster care and family-based alternative care for those who cannot, and supported and independent living within the community. It is not about closing doors, but about opening lives: making room so that people can participate, belong, and make choices about their own future.

In its enlargement reports, the European Commission has repeatedly expressed concern over the high number of people still residing in institutions in Ukraine, particularly people with intellectual or psychosocial disabilities and children. The UN Committee on the Rights of Persons with Disabilities also pointed out to Ukraine in 2024 that reconstruction money must not be used to build new institutions. Deinstitutionalisation is therefore not just a social issue, but an explicit condition within the EU accession process: it touches upon the chapters on human rights and social policy, as well as the conditions under which European reconstruction funds may be deployed.

Ukraine can learn here from countries that have already gone through this process, such as Bulgaria, Romania, and the Baltic states, which carried out deinstitutionalisation as part of their own EU accession. Through European networks such as the International Step by Step Association (ISSA), the European Association of Service providers for Persons with Disabilities (EASPD), and the Christian Platform for Eastern Europe (CPOE), SOFT tulip is closely connected to this broader European experience and actively shares that knowledge (alongside our own nearly 20 years of practical experience in the Ukrainian region of Zakarpattia) with Ukrainian partners.

This is not only important for human rights. A system that relies on large-scale institutions is also more vulnerable during wartime: hard to evacuate, hard to protect, and fully dependent on a single location and budget. A system built around families, foster care, and local community care is more flexible and resilient; it adapts more easily to today’s reality. In this way, deinstitutionalisation directly contributes to both the human rights agenda and the resilience of the country.

Our vision: bottom-up development

At SOFT tulip, we do not believe in top-down imposed change. We believe in bottom-up development; building a care system that truly lasts together with Ukrainian families, professionals, communities, and governments. For nearly twenty years, together with our network of Dutch healthcare organisations, we have worked in the Zakarpattia region on early support for families, community mental healthcare, and the transition from institutions to care close to home. Our partners share that experience with other regions in Ukraine via a peer-to-peer approach; this way, professionals themselves become ambassadors of change.

I am proud that we have formalised this course together with the Department of Social Policy of the Zakarpattia region in a new cooperation agreement for the period 2026–2031. It shows that this is not a project with an expiration date, but a long-term commitment.

Now, 15 years later, I know one thing for sure: the road to an inclusive society in Ukraine is still long, and the war does not make that road any easier. But as Ukraine works towards EU membership and develops its care system, a unique opportunity exists to do things differently. Not back to the institutions of the past, but forward to families and communities where every child, every parent, and every adult with a disability can fully participate. That is what we at SOFT tulip dedicate ourselves to every day.

Ieke van Lammeren

Director, SOFT tulip

Source:

UNICEF (2024), ‘Keeping families together in Europe’, figures on children in residential care per country, incl. Ukraine and Belarus.