Paths towards independent living and social inclusion in Europe

Social inclusion is fundamental to ensuring that everyone can participate fully in community life, enjoying their rights and freedoms while being valued and respected. How care and services are provided has direct impacts on personal independence and social inclusion.
 

Long-stay residential institutions, such as care homes and assisted living facilities, offer support to individuals with significant care needs. However, institutionalisation poses major risks to care recipients. Institutionalisation and institutional culture have been shown to result in isolation, depersonalisation, a lack of autonomy, alienation, disempowerment and social exclusion.
 

Deinstitutionalisation entails a shift to community-based care and support services, prioritising individualised approaches, social inclusion and independence. It should involve planning for and creating family- and community-provided care and services that enable individuals to live independent lives within regular communities.
 

This report presents evidence on institutional living in the EU and the transition towards family- and community-based care and services. It discusses the thinking behind and evidence on deinstitutionalisation, strategies and practices for the provision of family- and community-based care and services, and the challenges involved. The report also presents case studies illustrating user and stakeholder experiences of efforts to achieve independent living.
 

Policy context

The principles of independent living and social inclusion are central to many EU-level recommendations and regulations. The European Pillar of Social Rights emphasises that supporting independent living for individuals with disabilities (Principle 17), affordable long-term care services (Principle 18), and the right to housing and assistance for the homeless (Principle 19) are crucial for social inclusion.
 

The European Child Guarantee emphasises the importance of family living for children’s well-being and of children’s involvement in decision-making to enhance their social inclusion and welfare. The European Care Strategy stresses the importance of person-centred care, promoting opportunities for individuals requiring care to participate fully in society and advocating for a mix of long-term care services and support for informal carers. The Strategy for the Rights of Persons with Disabilities emphasises social inclusion and independent living, advocating for policies to increase access to affordable housing, personal assistance and community-based support services. The European Commission’s Green Paper on Mental Health stresses the need for an integrated approach to care, including community-based care.
 

The European Structural and Investment Funds – including the European Social Fund Plus and the European Regional Development Fund – support family- and community-based care services, with funds directed towards construction or renovation of facilities, capacity-building initiatives for informal carers and professionals, and schemes for the dissemination of best practices in the provision of community-based care and services.
 

Key findings

• The lack of comprehensive and comparable data on care and services and their recipients undermines the efforts of the EU and its Member States to develop care and services that foster independent living and social inclusion.
   
• The living conditions and lived experience of institutionalised people (and people at risk of institutionalisation) are underresearched. This is especially apparent in relation to children in residential care and people seeking emergency shelter because of homelessness or domestic abuse.
   
• Although most Member States have deinstitutionalisation strategies, in the 10 years up to 2022–2023 the numbers of children, adults with disabilities and older people in residential institutions have increased in the EU as a whole. The number of psychiatric care beds in hospitals has decreased marginally.
   
• Institutional culture entails isolation, depersonalisation, lack of participation in society, lack of control, rigidity of routine, block treatment, mobility restrictions, social distance and paternalism. Such a culture can be present in any setting but is often found in residential institutions and shelter accommodation, potentially resulting in limited privacy and personal freedom, insufficient services, inadequate living conditions and social exclusion.
   
• A lack of affordable and accessible housing with security of tenure and a shortage of foster care places impose severe limitations on Member States’ ability to provide family- and community-based care and support.
   
• A shortage of public funding for family- and community-based care and services imposes limits on independent living and social inclusion. The delivery of these services is compromised by underresourcing, understaffing, lack of training and administrative issues.

Policy pointers

• Ensure that people with care or support needs are involved in the development and review of policies that concern them.
   
• Adopt a person-centred approach, offering a mix of family- and community-based care and services.
   
• Ensure that service users have maximal control over their situation, with supported decision-making when necessary.
   
• Prioritise preventive measures that reduce the risk of institutionalisation.
   
• Seek to minimise duration of stay in residential institutions and ensure transition to community- and family-based care and services.
   
• Ensure provision of emergency shelter accommodation for people experiencing crisis situations such as homelessness or domestic abuse, and make permanent, independent housing available to enable timely transitions from shelters.
   
• Acknowledge the challenges of deinstitutionalisation processes. Carefully plan individuals’ transitions, maintaining continuity of support and daily activities.
   
• Increase the availability of affordable, accessible, inclusive and secure housing options in regular communities to prevent homelessness and facilitate independent living.
   
• Provide diverse family- and community-based care and services, including employment services, healthcare services, social services and services focused on social inclusion, ensuring adequate staffing and staff training.
   
• Improve the accessibility of mainstream services and facilities.
   
• Address institutional culture in all care settings by maximising individual autonomy in decision-making, minimising mobility restrictions, fostering social interaction and unlearning stereotypical client–staff roles.
   
• Support informal caregivers by providing training, respite care, counselling, technological aids and financial assistance.
   
• Ensure EU-wide data collection on care and service provision and the situations of carers and care recipients to monitor living conditions, policy implementation and trends over time.