Emergency Deinstitutionalisation: A joint call to act now!

Emergency Deinstitutionalisation: A joint call to act now!

On 11 June, ENIL, Validity Foundation and Disability Rights International organised a webinar “Safety through Inclusion: the Case for Emergency Deinstitutionalisation*”. The webinar was a call to action to ensure that disabled people can leave institutions as a matter of priority, in order to prevent further deaths from COVID-19 and to accelerate access to living independently and being included in the community. With participation of the Chair of the Committee on the Rights of Persons with Disabilities (CRPD Committee), Mr. Danlami Basharu, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms. Catalina Devandas, “emergency deinstitutionalisation” is now firmly on the agenda and will be followed up with concrete actions in the coming months.

The Covid-19 Disability Rights Monitor, launched by seven leading disability rights organisations, highlighted the impact the pandemic has had on the lives of disabled people across the world. This has ranged from lack of information, fear, isolation, to denial of medical care and people dying in nursing homes and other residential care facilities. With COVID-related deaths in care homes ranging from 19% to 62% world-wide, much of the public discourse has focused on medical treatment, personal protective equipment and other safety measures in these facilities. This, combined with funding available to EU Member States to deal with the COVID-19 crisis, may lead to further investment into institutions for disabled people, rather than efforts to urgently identify and invest in community-based alternatives.

Ann Campbell, of Validity Foundation, opened the webinar by proposing how to address the lack of focus on human rights:

“We have to convene a commission to develop practical guidelines on emergency response to deinstitutionalisation.  The guidelines should support states and donors by identifying the measures that would be necessary for an effective plan of action.” 

Danlami Basharu, the Chair of the CRPD Committee, supported the need for “early discharge, together with provision of adequate support for living in the community”, stating that this is “compatible with the human rights and values upheld in the Convention, including the right of persons with disabilities to life, and the obligations of the States Parties during situations of risk and humanitarian emergencies established in Article 11 of the Convention”. Mr. Basharu noted that, while people have been released from prisons and rehabilitation centres during the pandemic, to minimise infection rates, the same has not been the case for care institutions and psychiatric hospitals housing disabled people. Reaffirming the role of the CRPD Committee in this process, he stated:

“As part of our mandate as the international human rights monitoring mechanism established in the Convention, the Committee on the Rights of Persons with Disabilities may discuss during its forthcoming online session, an appropriate response to the situation of persons with disabilities in institutions during the pandemic. These measures include dedicating additional, specific attention to addressing the practical challenges to deinstitutionalization. The Committee may, for example, consider setting up a working group that engages with multiple relevant partners, including UN actors, civil society, NHRIs, who would have the mandate of developing guidance on deinstitutionalization, and in particular, through the current COVID-19 pandemic.”

Catalina Devandas, the Special Rapporteur on the Rights of Persons with Disabilities, confirmed her willingness to work together with the CRPD Committee in ensuring that States understand the importance of closing institutions and developing support in the community. She stated:

“I think this is a tragic opportunity we are facing […] it gives us a golden opportunity again to reinforce, to once again come back to the States and say, this is why these places need to be closed, once and for all.  This is why we need to transition to community services, this is why we need to make sure that everybody receives the support that they need.”

Ms. Devandas, whose mandate ends at the end of 2020, expressed concern at some of the reactions to deaths in institutions and nursing homes, which is threatening a return to the medical model. On a positive note, she shared information about the process she started with support of the Independent Expert on Older People, and in collaboration with the World Health Organisation (WHO) and other UN agencies. The aim of the process is to collect data and build evidence for deinstitutionalisation of long-term care services for older people, by looking at alternatives to nursing homes, with the ultimate objective of ensuring access to human rights of older people in need of support.

Dr. George Nikolaidis, the Chair of the Lanzarote Committee at the Council of Europe, shared his experience of emergency deinstitutionalisation in Greece. He highlighted the different ways the pandemic is impacting people in institutions: the high death toll, the overall psychological and physical impact, and the human rights dimension. In this respect he stated that the pandemic highlights the question of universality of rights, which should be applied to all groups, including disabled people, older people, children, refugees and migrants. On access to human rights, he stated:

“We know that living in a care institution is already an indication that someone’s rights have not been realised. During the pandemic era […] we have received reports about how it was managed in prisons, in mental health facilities, in the migrant and refugee camps.  As one elderly person termed this situation: “You asked me not to live in order not to die” . That was, I think, the most illustrative quote I have heard throughout this pandemic.”

Mr. Nikolaidis confirmed that, based on his experience, emergency deinstitutionalisation is possible and should be done. He noted that it is important to learn from history, however, and warned against moving people out of larger institutions and placing them into smaller facilities, or ending up with other unwanted outcomes, including homelessness.

In conclusion of the webinar, Eric Rosenthal, of Disability Rights International, emphasised the importance of moving swiftly with the actions put forward during the webinar and called for good practices of emergency deinstitutionalisation. These should be shared with ENIL, Validity Foundation and DRI, or alternatively with the CRPD Committee. Where such good practices exist, they can assist with developing guidance and plans for emergency deinstitutionalisation.

A recording of the webinar is available here.

* The term “emergency deinstitutionalisation” refers to protecting disabled peoples’ basic rights to live in the community, getting them the support required to leave the institution in the short term, and subsequently providing any additional support and access to mainstream society, in line with the UN Convention on the Rights of Persons with Disabilities. The aim is to achieve the transition as fast as possible, while preventing against homelessness, absence of formal support services and over-reliance on informal care.

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