The first cross-national study of Ukrainian caregivers of persons with disabilities in the EU reveals a group caught between two systems – and falling through the cracks of both.

The study “Invisible Care, Unmet Needs: The Situation of Ukrainian Caregivers of Persons with Disabilities in the EU” is the first of its kind to document across three EU member states, and at the EU policy level – the compounded hardships facing this group, and to translate qualitative evidence into concrete policy recommendations.

Since Russia’s full-scale invasion in February 2022, more than six million Ukrainians have sought refuge across the European Union, triggering the continent’s largest displacement since the Second World War. Among them are tens of thousands of families with disabled members – and the relatives, overwhelmingly women, who care for them around the clock. These caregivers have received almost no dedicated research attention and barely register in official statistics. The new study sets out to change that.

What the Research Found

The study combined desk research, in-depth interviews with caregivers and stakeholders, focus group discussions, and analysis of national and EU-level data across Germany, Poland, and Lithuania. Because no country currently maintains a registry of informal caregiver refugees, the researchers relied on a triangulated mix of proxy indicators, administrative data, and qualitative testimony.

The caregivers studied face an interlocking set of crises: inaccessible housing, administrative labyrinths, near-total exclusion from the labour market, and severe social isolation. Many cannot attend a language course, visit an employment centre, or even leave the house – because very often there is simply no one else to look after their disabled family member. There is simply no time to drive to a language school and spend several hours learning the local language.

Data invisibility is the root problem: refugees arrive registered simply as refugees, with no EU country systematically collecting disability data under the Temporary Protection Directive. Without identification, there is no targeted outreach, fast-tracked support, or service planning.

Housing insecurity is among the most urgent unmet needs. Accessible housing is scarce and expensive, leaving many families with disabled members in collective shelters long after others have moved to independent accommodation. In Lithuania, 45% of refugee respondents reported discrimination in housing or employment searches in 2023.

Labour market exclusion is near-total for caregivers of people with high support needs. In Germany, only 18% of refugees from households including a disabled person were employed by late 2023, versus 54% in other refugee households. In Poland and Lithuania, NGOs report effectively zero employment among mothers of children with severe disabilities — a structural consequence of lacking respite care, day services, or personal assistance.

Psychological strain and isolation are pervasive. Caregivers across all three countries described being confined to home or hospital, unable to form social connections, and managing both their own war trauma and that of the person they care for — typically without psychosocial support. Researchers describe this combination as a compounded vulnerability not captured by standard refugee frameworks.

Three Countries, Three Systems

While the challenges are structurally similar, the researchers document significant variation in national responses – and in the bureaucratic experiences of caregivers depending on where they settled.

Germany

Offers the most comprehensive welfare access – Ukrainians were moved into the regular social security system from mid-2022 – but the formal procedures are highly complex. One caregiver reported waiting four months simply to obtain an appointment to submit documentation for her child’s disability assessment. During that entire period, no interim support was provided and the child received no educational or therapeutic services.

Poland

Saw a remarkable grassroots response, with civil society and volunteer networks plugging many gaps. But formal disability certification and the caregiver allowance designed to support parents who stop work to care for a disabled child – have remained largely inaccessible to refugees due to procedural backlogs and eligibility barriers. Access to support has depended heavily on proximity to an active NGO, creating deep regional unevenness.

Lithuania

Introduced an innovative “carer of a person with a disability” status, granting caregivers up to 36 months of social insurance coverage and a stipend. The measure formally recognises caregiving – something neither Germany nor Poland has done for refugees. However, it cannot be combined with employment, effectively cementing carers’ economic inactivity rather than supporting a transition to work.

The Policy-Reality Gap

A recurring theme across the study’s findings is the chasm between what EU and national policies promise and what caregivers actually experience. Ukrainian refugees under temporary protection have the right to work, access healthcare, and enrol children in school. Yet none of these rights is realised in practice for caregivers whose entire lives are organised around an unmet care need.

What the Researchers Recommend

The study addresses its recommendations to three levels: EU institutions, member states, and civil society. At the EU level, it calls for mainstreaming disability and caregiving into all migration and asylum policy, developing a common recognition of caregiver status, strengthening the enforcement of the Temporary Protection Directive with disability-sensitive indicators, and using ESF+ and AMIF funds to expand accessible housing, respite care, and psychosocial support.

For member states, the key recommendations are to prioritise disabled refugee families in social housing, simplify benefit access through one-stop services, and expand respite care and community disability services. Labour market measures alone won’t work — without alternative care arrangements, employment policies merely shift the burden rather than lift it.

The study also calls urgently for disaggregated data collection. Without knowing how many caregiver refugees exist, where they live, and what their needs are, no effective policy response is possible. The researchers recommend that identification of disability and caregiving status become a routine part of refugee registration across all EU member states.

Rights to social protection are curtailed by practical barriers, rights to education are limited by lack of reasonable accommodations, and rights to work are nullified by inflexible labour markets and caregiving obligations.

As temporary protection for Ukrainian refugees approaches its potential expiry horizon, the study warns that current discussions about post-protection status focus primarily on employment-based residence permits – an approach that will structurally exclude full-time caregivers. Planning for this group’s long-term inclusion, the researchers argue, cannot wait.

The report represents a significant step toward making visible a population that European policy has, until now, effectively rendered invisible. Whether its recommendations translate into action will depend on whether EU institutions and member states are willing to treat caregiving not as a private family matter, but as a structural component of social protection – and a human rights issue.

This research was developed by Austausch e.V. as part of the INKuLtur programme (Berlin), in collaboration with the Lithuanian Disability Forum, the Polish Forum for People with Disabilities, and Sustento (Latvia), within the framework of the project “It’s Ability! – Fostering the Integration of Caregivers for Persons with Disabilities among Ukrainian Refugees in Germany, Poland, and Lithuania” (short title: It’s Ability!). The project is part of the Social Innovation+ Initiative funded by the European Union.

The views and opinions expressed are those of the author(s) and do not necessarily reflect those of the European Union. The European Union cannot be held responsible for them.