Adoption of strategies on deinstitutionalisation could reinvigorate a stalled process across Europe.
Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) ‘recognises the equal right of all persons with disabilities to live in the community … to choose their place of residence and where and with whom they live’. In 2017 the monitoring Committee on the Rights of Persons with Disabilities published its General Comment no. 5, clarifying that key to implementing article 19 was the closure of residential institutions.
The European Union and all 27 member states are party to the convention, which entered into force in 2008. A 2007 research study found evidence that at least 1,294,253 disabled children and adults were living in institutions throughout the EU. Yet in 2020 an expert report revised this figure upwards to 1,438,696 or more.
The European Network for Independent Living (ENIL) shadow report on the implementation of the UNCRPD, published in February, gathered extensive evidence of a trend to replace large institutions with smaller residential settings in many member states. Such small-scale institutions are often called group homes. In these settings the autonomy and self-determination of disabled people is curtailed in the same way as in larger institutions. As a result, the proliferation of group homes does not represent any progress towards deinstitutionalisation.
In working groups, meetings and committees, ENIL members confirm those trends. There is widespread concern that no country intends fully to implement the convention. Instead of offering serious policy commitments, governments appear to be paying lip-service.
‘Systemic transformations’
A closer look at the adoption and implementation of strategies or action plans for deinstitutionalisation confirms this impression. General Comment no. 5 recommends that all states party to the UNCRPD ‘adopt clear and targeted strategies for deinstitutionalisation’.
Such strategies or plans should contain ‘specific time frames and adequate budgets, in order to eliminate all forms of isolation, segregation and institutionalisation of persons with disabilities’. They should induce ‘systemic transformations’, ‘the closure of institutions’, ‘the elimination of institutionalising regulations’ and ‘the establishment of individual support services’—and they should be executed in ‘coordinated, cross-government approaches’.
An ENIL survey on independent living in the Council of Europe area, published in 2020, revealed that 18 out of 43 countries from which ENIL members responded had adopted deinstitutionalisation strategies. Among EU member states, 13 had done so: Bulgaria, Croatia, Cyprus, Estonia, Finland, Hungary, Ireland, Latvia, Lithuania, Poland, Romania, Slovakia and Slovenia.
Yet only one out of the 43 strategies, that of Moldova, was considered adequate by the ENIL respondents. Documents adopted by governments are often overly complex and leave the reader without a clear idea on how deinstitutionalisation will unfold—the strategies adopted by Lithuania and Poland are illustrative of this. In addition, disabled people’s organisations were not involved in the drafting of the deinstitutionalisation strategy for Poland. General Comment no. 5 strongly recommends the involvement of these organisations in designing and drafting such strategies.
Still unresolved
Notably absent from the EU countries with a deinstitutionalisation strategy is the entirety of south-west Europe. None of the most populated EU member states—France, Italy, Spain and Germany—has adopted such a document. This is not because the Committee on the Rights of Persons with Disabilities tires in recommending governments to do so.
Take Belgium. In 2014 the committee criticised Belgium for a ‘lack of deinstitutionalisation plans’. It called on the state ‘to implement a disability action plan at all levels’. Yet in 2019 it was still asking Belgium for information on ‘steps taken to implement disability action plans at the federal, regional and community levels’, indicating the issue remained unresolved.
It’s the same story with France. After a country visit in 2017, the UN special rapporteur on the rights of persons with disabilities recommended the adoption ‘of a concrete action plan to progressively close all existing institutions’. In 2021 the committee reiterated the recommendation ‘to adopt a national strategy and plans of action’. Reviewing the reports for other EU countries, the repetition of recommendations for the adoption of strategies—and lack of response from governments—can be found time and again.
Clear commitment
According to the early-20th-century social theorist Max Weber, ‘politics is the slow drilling of hard boards’. Governments are reluctant. But to advance the implementation of the UNCRPD and make progress on deinstitutionalisation, we need governments to adopt strategies and action plans to that effect, as envisiaged by General Comment no 5.
Deinstitutionalisation strategies should signify a clear policy commitment and entail the necessary budgetary resources. Civil-society and disabled-people’s organisations should demand such strategies and push governments to comply.
The EU should support this demand and adopt an EU-level deinstitutionalisation strategy. Not only should the EU continually urge member states to this effect but, if necessary, disbursement of relevant EU funds should be rendered conditional on the adoption of a national strategy or plan.
Florian Sanden is policy coordinator at the European Network on Independent Living (ENIL), a board member at Neurodiversity Belgium and a member of the advisory board of Interessenvertretung Selbstbestimmt Leben e.V.. He also serves on the WHO Technical Advisory Group on the WHO European framework for action to achieve the highest attainable standard of health for persons with disabilities 2022–2030.