Independent living and de-institutionalisation Policy
There are over one million persons living in institutions in the EU, deprived of their right to independent living, and Member States are not investing enough in community-based, person-centred support that would protect the rights of persons with disabilities.
Persons with disabilities, particularly those with high support needs, are highly at risk of being institutionalised. The independent living movement and disability movement in are campaigning for a transition from institutional to community-based care. The aim is to arrive at a point where we no longer have institutions, and where every person with disabilities has a choice about where they live, and with whom, including access to support to live independently
What is independent living?
The Independent Living Movement grew out of the disability rights movement, which began in the 1960s in the United States of America. It is a movement to enable persons with disabilities to have choice over where, how and with whom they live, just like anybody else, and not to be separated from their community.
Independent living is now a right set out in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Article 19 is one of the most transversal articles of the Convention. This means that if people cannot live independently, they are also unable to exercise many of their other rights (such as the right to education, work and employment and others).
General Comment No. 5 is a text that goes into more detail on how to interpret CRPD Article 19, (also referred to as “authoritative guidance”). It includes the following definition of Independent Living:
“Independent living/living independently means that individuals with disabilities are provided with all necessary means to enable them to exercise choice and control over their lives and make all decisions concerning their lives…”
EDF has also adopted a definition of Independent Living developed by the European Network of Independent Living (ENIL). This definition states that Independent Living “includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live”, that it “requires that the built environment, transport and information are accessible” and that “there is availability of technical aids, access to personal assistance and/or community-based services”.
What is an institution?
The European Expert Group on the Transition from institutional to Community-Based Care (EEG) (which we are a member of) defines an institution as being any residential care where:
- Residents are isolated from the broader community and/or compelled to live together.
- Residents do not have sufficient control over their lives and over decisions which affect them.
The requirements of the organisation itself tend to take precedence over the residents’ individual needs.
People living in institutions therefore lack control over the direction their lives take. In the worst cases, institutional care can even lead to extreme human rights violations, with residents subjected to degrading treatment, violence and other forms of abuse.
General Comment No 5 includes a more detailed definition of institutional care, which should be used to decide whether a particular service is in compliance with the CRPD or not. According to the General Comment, institutions can include facilities with more than a hundred residents, but also group homes with five to eight individuals, if these homes continue to isolate residents and deny them control over how they live their life.
What do we know about the situation of institutions in Europe?
Support for persons with disabilities often remains unavailable or tied to particular living arrangements. Living in the community is difficult when there is a shortage of accessible housing and when public services, public transport and amenities such as shops and restaurants are also inaccessible.
Instead of developing possibilities for persons with disabilities to live independently in the community, such as introducing personal assistance, and affordable and accessible housing solutions, governments typically invest in the running of institutions or moving people into smaller facilities, which place the needs of the service above the will and preferences of the person.
There is also a need for a change in mindsets. Historically, persons with disabilities were thought to be better off in institutions. This medical/charity model of supporting persons with disabilities still exists among many professionals, parents, service providers. As such, we still see models of care that deprive persons with disabilities of making basic choices about how they live.
When alternatives to institutional care are not available, persons with disabilities typically end up being placed and/or abandoned in institutions where they are isolated and segregated from their community. If not, the only other available solution is for family members, particularly women, to give up work to become full-time carers. This has a huge impact on the opportunities afforded to many women, and on risk of household poverty. Children with disabilities worldwide are 17 times more likely to live in institutional care that children without disabilities. They are also more likely to stay in institutions on a long-term basis, often indefinitely.
We generally refer to the process of closing institutions in favour of community-based alternatives as ‘de-institutionalisation’, or ‘DI’ for short. Alternative community-based forms of care and support must be up and running before the closure of institutions, but this does not take away from the urgency required to set the transition in process and should not be used as an excuse to delay it. DI also refers to the process of creating conditions for the prevention of institutionalisation, and banning the building or renovation of new institutions.
How do we campaign for independent living?
EU Structural Investment funds. EU Regulations prohibit investing EU funds into institutional care settings (which means no EU money should go into building new institutions or refurbishing existing ones) but these rules are not always enforced. The EU is investing funds in existing institutions, including to increase their energy efficiency.
We actively advocate around the wording of the regulations for the next funding period (2021-2027) to ensure:
- Stricter provisions prohibiting investment in institutional care and residential care that remains institutional in practice (see the definition of institution above)
- Better inclusion of organisations of persons with disabilities in governance and monitoring
- A clearer complaint mechanism to alert the European Commission and Managing Authorities in the Member
- States in cases when EU money goes towards the continued institutionalisation of persons with disabilities and other groups.
We are also advocating strongly for an increase in the percentage of funds such as the European Social Fund Plus (ESF+) that goes towards social inclusion, and for investing in community-based services that can act as an alternative for institutional care.
We provide evidence to European Commission desk officers of the need for further investment in community-based services and support for independent living in certain Member States through the European Semester Process
As a member of the European Expert Group on the Transition from institutional to Community-Based Care(EEG), we regularly join forces with other NGOs and Human Rights Organisations to advocate for the gradual closure of institutional care across the EU and beyond, in favour of investment in community-based services. This coalition, includes civil society an UN agencies and represents persons with disabilities living in institutions, children, people who are homeless and persons experiencing mental health issues.
We actively advocate for the improvement of data collection on persons living in institutional care by the EU’s data collecting body Eurostat, in cooperation with the Member States.
We carefully monitor the press for incidents of human rights violations related to institutionalisation. Below you can find our statements in response to emergency situations and cases of abuse in institutional care:
- Analysis of the final Common Provisions Regulation agreement 2021-2027
- Analysis of the final Regional Development Fund Regulation agreement 2021-2027
- Joint statement by EDF, the European Network on Independent Living (ENIL) and the European Deafblind Union on community-based support during COVID 19
- EDF’s statement on the dangers for residents and staff in care homes during COVID 19
- EDF’s statement on the tragic fire in Czechia
- EDF’s reaction to abuses at Whorlton Hall specialist hospital
- EDF’s work on Structural Investment funds
- EDF’s work on the European Semester
- Overview of DI investments through ESIF 2014-2020
- Definition of independent living (developed by ENIL and adopted by EDF)
- Myth Buster on Independent Living
- CRPD Article 19 – Living independently and being included in the community
- CRPD General Comment 5