The European Expert Group on the Transition from Institutional to Community-based Care

On September 7th, the European Commission released the European Care Strategy. The Strategy focuses on the importance of providing accessible, affordable, high-quality, and available care services to all. With this purpose, the Strategy aims to set an agenda to improve the current situation for both carers and service users.

The EEG welcomes the inclusion of elements such as gender-related issues among caregivers – both formal and informal – the call for affordable care and services, the push for support to family carers as well as the proposal for more EU action to promote national policy reforms. Moreover, the EEG acknowledges the focus of the Care Strategy on ensuring sustainable financing of social services and the Commission’s call to Member States on promoting both private and public investment within this area. The EEG welcomes the draft Council recommendation on the revision of the Barcelona Targets on early childhood education and care (ECEC). The recommendation states that “children with disabilities have the right to participate in mainstream ECEC on an equal basis with others”. It emphasizes accessibility including adequate infrastructure, including adaptation to special needs of parents and “the professionalization of staff and specialists to adequately support children with disabilities” as key aspects of inclusive ECEC. These features make the recommendation an example of good policy practice for the inclusion of disabled children into mainstream education and against any form of segregation.

Nevertheless, the EEG remarks several points which should be addressed for the general improvement of the current EU Care Strategy (full statement here)

The European Semester cycle aims to review performances of Member States each year on both economic and social matters. To guide Members States, the European Commission publishes the Country Specific Recommendations (CSRs) in addition to Country Reports (CRs) within the Spring Package of the European Semester mechanism.
The analysis of CRs and CSRs highlighted the need for actions in merit of the Russian invasion of Ukraine, the energy crisis, as well as the post-pandemic period. However, in its analysis, the EEG could also identify the presence of specific recommendations in compliance with the transition from institutions to community-based services.

Deinstitutionalisation
The EEG believes that all people have the right to live outside institutions. Institutions are any residential care where people are forced to live together and/or away from the community, residents do not have decisional power, and/or the organization of the care takes precedence over the residents’ individual needs. The process to end institutional care is defined as deinstitutionalisation.
In these regard, deinstitutionalisation has been mentioned within CRs or CSRs of ten countries: Austria, Belgium, Bulgaria, Croatia, France, Italy, Poland, Portugal, Romania and Spain.  The CRs and CSRs of five countries (Bulgaria, Portugal, Belgium, Croatia, Italy) mention specific initiatives in the National Recovery and Resilience Plans (NRRPs) or other political reforms to support deinstitutionalisation. Other Country Reports reported the urgency to implement further measures and the need to address NRRP funds in the deinstitutionalisation process (Austria, France, Poland, Spain). In the case of Romania, the Country Report highlighted the lack of human resources, administrative capacity and sufficiently integrated services as structural elements preventing deinstitutionalisation.

Community-based services for specific target groups
In addition to specific recommendations regarding the transition from institutional to inclusive support practices, the analysis of the CSRs has also focused on the implementation of community-based services in reference to the EEG target groups.
In particular, concerning children and their families, several of the Country Reports highlighted an increase in the rate of poverty or risk of social exclusion in comparison to data from previous years. While in some cases the allocation of funds to support the inclusion of children in the community has brought to some results (like in Latvia and Ireland), the percentage of children at risk of poverty and social exclusion remains high in most of Member States. The findings highlight an enhanced risk for children in low-income households, children with disabilities, Roma children and children with a migrant background, etc. Concerning these last two groups, it is important to point out the high rate of Roma children that leave education early (Romania and Slovakia) and the fact that children with migrant background are three times more at risk of poverty (Netherlands, Luxembourg). Moreover, the CSRs describe a substantial lack of provision of formal care for children below 3 years old – specifically in some Members States (Czechia, Lithuania, Malta, Poland and Romania) – which has been exacerbated by the pandemic.
Similarly, the analysis of Country Reports has emphasized number of initiatives within NRRPs to promote social inclusion of people with disabilities. Some CRs include measures to boost employability (Belgium, France) as well as the use of ESF+ funds to establish a network of social inclusion services (Cyprus, Italy). However, employment gaps between people with and without disabilities remain a major problem in almost all Member States’ CSRs[1].
Likewise, people with disabilities have a high rate of risk of poverty and social exclusion throughout all EU countries (EU average was 28.4% in 2021) with even higher rates in several countries (Estonia, Germany, Ireland and Lithuania). In the specific case of Romania, the CSRs highlight deinstitutionalisation of people with disabilities as a substantial step in achieving the 2030 EU headline target on poverty reduction. Furthermore, findings from the EEG’s analysis identify people with disabilities often not finishing school due to inequalities within the educational system (Belgium, Estonia).
Although most CSRs do not include mental health, the promotion of deinstitutionalisation and community services for people with mental health problems is mentioned as a goal for some countries(Portugal and the Netherlands)

Housing
Within the CRs, accessible social housing represents another common issue. Shortages and low quality of social housing concerns a number of Member States like Belgium, Czechia, Denmark, Hungary, Ireland, Latvia, Lithuania, and Luxembourg. In particular, with no national strategy to end homelessness, social housing represents a particular issue for Slovakia. In order to face the lack of social housing, the CSRs call for the adoption of a specific legal framework and the implementation of affordable, social housing facilities. Accessible social housing is also recommended in many CSRs in regard to people fleeing Ukraine and in response to the migration emergency in the EU.

Conclusions
Within its analysis, the EEG could identify general information for target topics such as deinstitutionalisation, community-based services and social housing. Despite the allocation of some funds for community-based services, their accessibility remains difficult in most of EU state members for those people living in poverty and social exclusion. Finally, social housing represents another issue present in several Member States. This problem is enhanced both by the absence of housing strategies as well as by Russia’s invasion of Ukrainian.

[1] According to research, the Disability Employment Gap is substantial and varies between 10 to 42 percentage points amont EU countries. In the EU as a whole 50,6% of disabled people are employed, compared to 74,8% of people without a disability. For individual disabilities the situation can be worse. Out of 30 million blind and partially sighted persons the unemployment rate is 75%. Among autistic people, only 10% are in employment. According to the ENIL Independent Living Survey from 2020, 96% of respondents found labour market access to be inadequate or requiring improvement. 

The ongoing war in Ukraine has already caused the death of thousand of civilians and the massive fleeing of people from their homes. As the mediation process is still in progress and there has not been any indication of a de-escalation of the conflict, the number of people seeking safety from the war is expected to increase.

In these circumstances, EEG members have taken several initiatives not to leave behind and expose to further risks people in need of support.

Here you can find the list of EEG members’ initiatives to support children, people with disabilities, homeless people and people experiencing mental health problems in Ukraine:

• Autism Europe: support for autistic people in Ukraine.
• COFACE Families Europe: COFACE Families Europe stands with Ukraine.
• EASPD: How can you help.
• EDF: Donations for Ukraine.
• ENIL/ECCR: Support disabled people in Ukraine.
• ESN: ESN Statement on Ukraine.
• Eurochild: Eurochild stands in solidarity with the children of Ukraine.
• FEANTSA: Call for a swift reception of refugees from Ukraine.
• Inclusion Europe: Words of families of people with intellectual disabilities in Ukraine.
• LUMOS: Ukraine Emergency Appeal.
• Mental Health Europe: Mental Health Europe support during the Ukraine Crisis
• UNICEF: Unicef donations in support of Ukrainian children.
• FRA: FRA statement in solidarity of Ukranians crossing the EU borders.

EEG’s analysis of Recovery Plans and recommendations for 2022 European Semester

The European Semester represents an important process to strengthen not only economic and fiscal reforms but also social inclusive policies among the European Union (EU) Member States. While the 2021 European Semester mechanisms had been halted to allow a better response to the Covid-19 pandemic, the 2022 European Semester goes back to its original cycle with the adoption of country reports and country-specific recommendations by the European Commission. It will, however, still pay particular attention to the National Recovery and Resilience Plans (NRRPs). In order to inform the European Semester outputs, the European Expert Group on the Transition from Institutional to Community-Based Care (EEG) has consulted its members and gathered information on the process of deinstitutionalisation (DI) and on the development of community-based care. The EEG has been focusing on 12 Member States being Belgium, Bulgaria, Croatia, Czech Republic, France, Greece, Hungary, Italy, Latvia, Portugal, Romania, Slovakia and Spain.

The EEG has submitted its findings to support the European Commission in promoting inclusive NRRPs and in the writing of country-specific recommendations which will be published in May 2022. Indeed, through this contribution the EEG aims to support the implementation of the standards in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the United Nations Convention on the Rights of the Child (UNCRC), the UN guidelines for the Alternative Care of Children, and the European Fundamental Rights Charter.

The EEG country fact-sheets delineate the existing situation of the DI process – including improvements and ongoing problems – and point out the main weaknesses as well as strengths of the NRRPs.

Concerning the situation of children within the Member States we have analysed, the EEG has pointed out that the number of children in institutional care has not undergone considerable changes in last 2 years (only Spain and Bulgaria have seen decreases). In most of the cases, children in residential care were in institutions: while in some states almost the totality of children in alternative care remain in already existing institutions, the EEG expressed concern about the inclusion of the construction of new institutions in some NRPPs (such as Belgium’s). Moreover, the EEG has identified poverty and lack of economic support as being among the main reasons for the institutionalisation of children; other reasons include lack of community-based services able to meet the needs of persons with disabilities, marginalisation, neglect, abuse, a lack of family support services in the community or migration. In the case of asylum-seeking children, they might end up staying in the institutional care system until they reach the age of maturity or, as in the case of Hungary, they might end up being confined in transit zone areas. In its analysis, the EEG has also highlighted a lack of data collection and disaggregated data which prevent the implementation of efficient policies and reforms towards deinstitutionalisation. The transition process from institutional to community-based care is further hindered by the absence of a defined strategy on a regional or community level: this is particularly true for those countries which have autonomous administration within the same country, like Spain, Belgium and Italy.

In the examined countries, the EEG has also analysed the situation and promotion of independent living for persons with disabilities. In its findings, the EEG remarked both a worsening and an improvement of the general trends depending on the Member State: some Member States (like France, Croatia and Portugal) have seen the number of people in institutions increasing during the last year due to the lack of community-based and person-centered services. This has also been enhanced by the incorrect use of EU funding going towards the deinstitutionalisation process and by the lack of available social housing. Some positive changes have also been noted on a political and legal level: for example, Greece worked to promote a National Deinstitutionalisation Strategy and Hungary has made changes to the constitution to support community-based services. Nevertheless, such changes have been weak in their implementation due to the lack of data and an incorrect approach towards the concept of deinstitutionalisation. In its review of Member States, the EEG has also been focusing on the Mental Health services and on persons with mental health issues in institutions. Overall, the EEG has outlined an increase in the number of people with mental health needs within institutions despite the launch – in few countries – of political reforms aiming to promote community-based mental health centres. Furthermore, when considering the situation of persons with disabilities, the EEG has defined the lack of clear and quantifiable targets, lack of economic support, and the lack of data availability as further elements that contribute to institutionalisation.

Finally, in the analysis of the Countries’ Recovery and Resilience Plans, the EEG has identified common recommendations for the considered Member States:

• The transition from institutions to community-based care needs to follow UNCRPD and UNCRC principles; moreover, NRRPs need to exclude funding to new or pre-existing institutions and need to fix clear targets in the transition process.
• To prevent child separation from their families, it is important that NRRPs include measures and programmes to prevent risk of poverty; inclusive education reforms are also very important to stop the institutionalisation of children with disabilities. Moreover, NRRPs should focus on increasing foster care provision and develop a wide range of support options in the community.
• NRRPs should promote further research into the monitoring and collection of data. This should be applied specifically in the data concerning children (including children deprived of parental care), children with disabilities, people with mental health needs and persons with disabilities.
• There should be a greater focus on social housing and on facilitating the process of access to available social housing.

The EEG would like to express its deepest condolences for the loss of David Sassoli, President of the European Parliament. Mr Sassoli’s engagement in upholding children’s rights and the rights of persons with disabilities made him a valuable ally as a person and as a policy maker.

As an association, we will remember with his leadership against inequality and the defense of these most at risk of exclusion.

The EEG’s thoughts go out to Mr Sassoli’s family, his loved ones and all Europeans.

The online event “The Recovery and Resilience Facility as a means to creating community and family-based care”, which took place on the 18^th of November 2021, aimed to provide an overview of the opportunities and the risks that the Recovery and Resilience Facility might fuel within the European Union.

In 2021, the EEG has been monitoring the Recovery and Resilience Facility (RRF), its investments for social resilience and recovery since out of the six pillars of the RRF most of them aim at inclusive growth; social cohesion; health & social resilience; and policies for future generations. The Expert Group publicly called for the EU and its Member States to commit to investing this money into deinstitutionalisation (DI) as well as in community-based services, and strictly forbidding any investments in institutions. The EEG also has been reiterating the higher impact of the pandemic on people residing in institutions.

Moderated by Haydn Hammersley, Social Policy Officer at the European Disability Forum and EEG co-chair, the event gathered almost 70 representatives from ministries of different countries, the European Commission and national and European civil society organisations.

The meeting opened with a video message by Commissioner Helena Dalli in which she highlighted that the RRF must respect the principles of gender equality and equal opportunities for all. She also encouraged Member States to put in place an inclusive process to monitor the implementation of the National Recovery Plans by including NGOs active in the area of equality and inclusion. She concluded with the following call: “Let us all contribute to a Union of Equality”.

At the beginning of the event, UN Special Rapporteur on the rights of persons with disabilities Gerard Quinn, has also stressed the fundamental role of the European Union as world leader in the implementation of deinstitutionalization policies (read full speech).

The event showed that the RRF truly represents a once-in-a-life occasion to boost the process of deinstitutionalisation and that these funds need to be carefully monitored in their use. Attendees also got insights in various NRRPs such as those of Romania, Portugal and Greece.

The EEG provided several examples of concrete projects which introduce indicators for monitoring of DI progress, promote housing initiatives and support young people entering into adulthood out of residential homes, including people with disabilities and homeless people.

Read the full report to find out how these funds can support deinstitutionalisation in Europe