Persons with intellectual disabilities and with complex support needs most likely to live in institutions - report

“Persons with intellectual disabilities and with complex support needs most likely to live in institutions”, finds a report about deinstitutionalisation in the EU.

There are still over 1,400,000 people living in institutions in the EU.

The 2020 Report on the Transition from Institutional Care to Community-Based Services in 27 EU Member States marks 10 years since the publication of the first report addressing the issues linked to institutional care reforms and to find solutions for more humane, person-centred and individualised models of care.

The report was mandated by the European Commission and prepared in consultation with the EEG.

The report presents these key findings:

there are still at least 1,438,696 persons living in institutions;
the number of people in institutions does not seem to have substantially changed over the past 10 years;
the number of children in residential care has slightly decreased, with them moving to live with their families, being fostered, adopted, or reaching majority and therefore leaving residential care for children;
in all the 27 EU countries, people are living in residential care, with only a small number of it being primarily small-scale and community-based, e.g. dispersed among ordinary housing in the general community. Small-scale residential services still represent a minority of the care settings in most of the 27 EU countries;
in many countries, and especially those who started the process of deinstitutionalisation some time ago persons with intellectual disabilities and people with complex support needs are most likely to still live in institutional settings.

Based on these findings the report highlights key concerns and potential solutions:

The importance of person-centred and individualised support for all, including people with complex support needs, is the only way to ensure full inclusion and participation in the community.

There is very little information available on people’s lived experiences in terms of choice and control, inclusion, and participation. Understanding the impact of policies on the lives of people should be a key target. Clear definitions, shared terminology, and independent research are fundamental elements to achieve this.

In almost all countries, the lack of affordable community-based and social housing is one of the primary barriers to scaling up community living, and to combating homelessness; appropriate housing policies, strategies, and practices are crucial to sustaining deinstitutionalisation efforts.

Many of the so-called “small-scale” residential care facilities continue to accommodate large groups of people, making individualised attention and inclusion into the community rather difficult and, thereby, perpetuating a segregating culture, instead of promoting community-based alternatives.

Responsibility is an issue. In many of the countries where deinstitutionalisation is one of the EU priority areas, the transition risks being perceived as an ”EU funded project”, lacking long-term sustainability, and scaling up of results beyond EU funding. Furthermore, there is a widespread transfer of responsibility from the national to the local level, not always accompanied by funding, with potential issues in terms of coordination, consistency, and competence of services. National leadership is essential in making widespread changes with multi-level and cross-sectoral coordination. National strategies on deinstitutionalisation need to comprise adequate funding, concrete implementation, and monitoring mechanisms.

Read the 2020 report in full (.pdf)