The European Commission’s initiative on long-term care addresses disability yet ignores key aspects of international law.
On September 7th the European Commission published the long-awaited European Care Strategy, which tries to address the support needs of various groups such as older and disabled people. The strategy was heralded as a step in the right direction by non-governmental organisations and the European Public Service Union.
Unfortunately, most of the praise, as well as the strategy itself, ignored key developments in disability rights in recent years, starting with the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006. All European Union member states signed the convention, as did the EU collectively in 2007. The European Care Strategy signalled intent to respect the convention but subsequent paragraphs, and especially the draft of a Council of the EU recommendation on long-term care, did not live up to the challenge.
First of all, treating disability as a subtopic of care hardly respects the UNCRPD. Placing somebody under care inevitably implies that there is no more hope for their full participation in society. The letter and spirit of the convention on the other hand confirm the inalienable right of disabled people to participate in all areas of life on an equal basis with others. This means disabled people have the same right to work, education, leisure and family and to all the other things people do.
Disabled people thus have a right to independent living. Some require support in achieving this, to which they are entitled. The support a disabled person receives must however always have the objective of enabling full social participation. Placing somebody in care implies putting them under the authority of a medical professional. This is an embodiment of the medical model of disability, which is categorically rejected by the UNCRPD.
The draft council recommendation, one of two pieces of legislation proposed by the strategy, refers to ‘traditional residential facilities’ and ‘person-centred’ approaches to disability support. Offering these choices as equal options is unacceptable from the point of view of the convention.
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The UN body which supports its implementation, the Committee on the Rights of Persons with Disabilities (CRPD), has published an array of documents on the interpretation of the various articles. Its general comment (number 5) on independent living clearly states that article 19 of the convention obliges states-party to close all types of residential settings for disabled people. Under the UNCRPD, residential settings—also referred to as institutions—are not an option for disability support.
Unfortunately, no state-party is implementing this part of the convention in a serious manner—reflected in estimates of the number of disabled people living in institutions in EU member states, which remained unchanged between 2007 and 2019. From the point of view of the independent-living movement, many states-party are rather building smaller institutions, often referred to in euphemistic terms.
By talking about ‘innovative care settings, such as shared housing where people with long-term care needs share domestic support and care services’, the European Care Strategy endorses this development. To clarify misunderstandings in interpreting the convention, on September 9th the CRPD published new guidelines on deinstitutionalisation, which list the obligatory sharing of assistance with others as the number-one criterion to identify an institution.
The UNCRPD also commits states-party to involving disabled people and their representative organisations in decision-making concerning all relevant policy initiatives. Tellingly, the draft council recommendation does not list disabled people’s organisations under the stakeholders consulted. Nor is disability listed as a topic that was discussed. This turns upside down the central tenet of the disabled self-advocacy movement—nothing about us without us.
It is not just international law mandating the end of institutions. On September 27th disabled activists marched in Brussels, affirming that they are fed up with being ferried into facilities under the authority of service providers, separated from the community.
To turn the European Care Strategy around, the council recommendation on long-term care needs first of all to recognise disability support as a topic distinct from care. Secondly, it needs a clear commitment to deinstitutionalisation. The EU must not spend any more resources on maintaining institutions, including micro-institutions such as group homes.
The only permissible choices of disability support are services such as personal assistance or peer support. A personal assistant is a person providing one-on-one support to a disabled person in all areas of life, as needed, for as much time per day as is required. Homecare services are permissible as a form of disability support if they follow a direct-employer model where the disabled person chooses and/or employs their carers.
The care strategy is not contextualised by the European Strategy on the Rights of Persons with Disabilities, the EU´s policy framework in this arena. It needs to be codified in the long-term care recommendation that, in cases of conflict, policies adopted within that framework take precedence or we risk legislative confusion.
It is up to member-state governments to set the care strategy on a path towards deinstitutionalisation, personal assistance and peer support. The European Network on Independent Living has prepared detailed amendments and calls on member states to enact the necessary changes in council.
Florian Sanden is policy co-ordinator at the European Network on Independent Living. A political scientist by training, he is an activist for disability rights, transnational co-operation and social justice.