The European Expert Group on the transition from institutional to community-based care (EEG) – of which Autism-Europe is a full member – introduces the Report on the Transition from Institutional Care to Community-Based Services in 27 EU Member States. This study marks 10 years since the publication of an initial important report, mandated by EU-Commissioner Vladimir Špidla to address the issues linked to institutional care reforms and to find solutions for more humane, person-centred and individualised models of care.
In times of the COVID-19 pandemic and lockdowns, this new report comes at a critical juncture, where the defining negative aspects of institutionalisation (the congregation of a large number of people in one building and the deprivation of social contacts etc.) are increasingly blatant and only tend to aggravate with exposure to the virus. As the EEG recently highlighted, the way this crisis is affecting those who need daily care and their support systems stems from structural underinvestment in the inclusion and well-being of all, and in the promotion of different models of support in the community. This is also reflected in the findings of this Report. If nothing changes, the consequences of this crisis are likely to be devastating to the most vulnerable, with long-term consequences on their well-being and development.
Again upon a mandate from the European Commission and in consultation with the members of the EEG, the authors of the present Report, Jan Šiška and Julie Beadle-Brown, inquired how far the transition from institutional to family and community-based care and support has progressed in the past 10 years. This Report offers a broad picture on situations, solutions and trends in deinstitutionalisation (DI) and community-living in the EU for persons with disabilities, with mental health problems, experiencing homeless, children (including children with disabilities and unaccompanied or separated migrant children), and older adults in 27 EU countries. The picture drawn in Europe highlights the following trends:
- 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 some of the countries, people stayed longer in prison and hospitals than needed because of the lack of accommodation in the community, while in others institutional care was the main form of care provision for children without parental care.
- in many countries, and especially those who started the process of deinstitutionalisation (or DI) some time ago persons with intellectual disabilities and complex needs are most likely to still live in institutional settings.
Based on these findings, the Report furthermore highlights key concerns and potential solutions that have emerged from its analysis, such as:
- 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. The way careis being provided, the quality of support, and their outcomes in terms of quality of life are key indicators.
- Although DI is also about the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities, 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 DI 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 DI need to comprise adequate funding, concrete implementation, and monitoring mechanisms.
Since the European Semester, including Country Specific Recommendations (CSRs), provides the framework for continuous economic, employment, and social policy coordination in the Union, the EEG is pleased to see that this year social protection and social housing are prioritised in several CSRs. However, the EEG regrets that none of the 2020 CSRs addresses the need for DI transition. The most vulnerable population deserves adequate recovery response that would include development of prevention and community-based services.
The EEG welcomes the Commission’s intention of turning this crisis into an opportunity by investing in our future through the proposals of Recovery Plan and updated Multiannual Financial Framework. This investment must put at the centre children and adults in need of care and support, their families, informal carers, and the care and support systems which foster community, person-centred and family support.
The EEG and its members are committed to continuing their advocacy efforts and to supporting the EU, its Member States and other key actors in their deinstitutionalisation efforts and strongly encourage them to ensure that the rights of persons in need of care and support are not to further compromised by the consequences of the COVID-19 pandemic.
Report on the Transition from Institutional Care to Community-Based Services in 27 EU Member States (2020) Jan Šiška and Julie Beadle-Brown
More information about the EEG: https://deinstitutionalisation.com/