Disability, deinstitutionalization… and backwardness – Florian Sanden
After a decade of inertia, the EU has made little progress in deinstitutionalising people with disabilities.
With the entry into force of the United Nations Convention on the rights of persons with disabilities in January 2011, the European Union became, for the first time, a party to an international treaty, a right usually reserved for States. Legally committing to the convention was an important step in the EU’s efforts to be recognized as a major player in international politics. (It still has to, for example, uphold the commitment made in the 2007 Lisbon Treaty to accede to the European Convention on Human Rights, although its members are all members of the Council of Europe which sponsors it .)
More than a decade after the convention entered into force, however, little progress has been made in implementation in key areas. Thus, the EU jeopardizes its reputation as a serious global player.
Article 19 of the convention establishes the right of persons with disabilities to live independently and to be included in society. Its states parties “recognize the equal rights of all persons with disabilities to live in the community” and that “persons with disabilities have the opportunity to choose where they live and where and with whom they live…not forced to live in a particular place”. way of life “.
When the convention was introduced, many people with disabilities in the EU were in institutional settings: social care institutions, group homes, nursing homes or psychiatric hospitals. Since these institutions deprive their residents of the rights codified in Article 19, the convention should be seen as a call for general deinstitutionalization.
In fact, General Comment no. 5 of the Committee on the Rights of Persons with Disabilities precise that “independent living and community inclusion refer to living settings outside of residential institutions”. It further explains that states parties are required to “replace any institutionalized setting with independent living support services.”
The committee monitors the implementation of the agreement and published its concluding observations on the first EU implementation report in 2015, noting the lack of progress on deinstitutionalisation. She found that “across the European Union, people with disabilities, in particular people with intellectual and/or psychosocial disabilities, still live in institutions”. He criticized the EU for supporting through its structural and investment funds the maintenance of residential institutions in some member states.
The European Network on Independent Living has been monitoring the rights of people with disabilities since 1989. In February, ENIL published a shadow report on the implementation of the convention in the EU.
The report raises “serious concerns”. It finds that the right to live independently is widely denied and that this has implications for other basic human rights, such as the right to life and freedom from torture or cruel, inhuman or degrading. Across Europe, at least 1.4 million people are still confined to institutions, a number that has remained unchanged since the adoption of the convention.
Living in a social or group home involves severe restrictions on personal autonomy. Generally, people with disabilities in these institutions have no influence over the services and support they receive. Adults are required to ask permission to invite guests or participate in activities outside of the setting. There are often fixed times, including for getting up or going to bed and for meals. Residents must ask permission to use the kitchen or telephone.
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Living in such conditions is discriminatory and constitutes a violation of rights. During the pandemic, the extreme dependence of institutionalized disabled people in access to all basic services has taken its toll. Deaths in retirement homes have been reported (at different times) to account for 51% of Covid-19 deaths in the Netherlands and 68% in Spain. People with disabilities have also been exposed to systemic denial and health care rationing. The city of Madrid’s health department has issued guidelines saying that people with intellectual disabilities should not be sent to hospital and there is evidence that in Italy doctors have rationed intensive care, depending on who was considered worthy.
Alongside these violations of Article 10 of the convention (right to life), those of Article 14 (liberty and security) and Article 15 (protection against torture or cruel, inhuman treatment or or demeaning) paint a bleak picture of institutional abuse. Physical restraints are commonly used and in Finland, Ireland, Spain and Italy residents have been locked in their rooms during the pandemic. In Ireland, a woman with Alzheimer’s disease was raped by a worker while confined and in Finland, an autistic boy was found to have been tied to a chair for more than five years.
Ahead of the presentation of the EU’s second periodic report on compliance with the convention, the monitoring committee published a list of problems. Given the unsatisfactory record of the implementation of Article 19, the committee is likely to renew its call for complete deinstitutionalization in its concluding observations. Already, the EU is called upon to “immediately halt EU investments and actions that maintain the institutionalization of persons with disabilities…and to strongly support programs aimed at releasing persons with disabilities from residential institutions”.
The convention legally obliges the EU to close all institutions. But beyond that, the attacks on human dignity perpetrated in such institutions speak for themselves. If the EU wants to be a leader in disability rights, it should seriously step up its efforts to implement the convention.
In particular, the EU funding regime deserves reform. State aid and public procurement regulations need to be examined in terms of the tacit support they may offer to institutional forms of care. Any rules tainted in this way should be removed.