by EDF Board Member Giampiero Griffo
Originally published in Italian – L’istituzionalizzazione delle persone con disabilità e l’emergenza che viviamo – superando.it
The information that we expected and feared is, unfortunately, coming out.
Over the last few days it has been emerging that the number of older people dying due to COVID-19 in nursing homes, retirement homes and other residential institutions is growing. It seems (although the data is scarce and there are, as of yet, no disaggregated statistics) that in these institutions, the infection and subsequent deaths are due the lack of adequate protection measures for both residents and staff.
The most shocking news comes from a residential institution for persons with intellectual disabilities in Sicily (the Institute for Scientific Research and Treatment (Irccs) ‘Oasi Maria Santissima’ in Troina) where there are 70 people infected (45 residents and 25 members of staff) from a total of 160 residents and 130 staff. The managers there admitted that masks and other prevention equipment were not available and therefore not being used.
This information comes from the Mayor of Troina, Fabio Venezia, who gave an interview from his home where he has been in quarantine since meeting with the institution’s managers.
The Mayor declared that he is “in contact with the medical staff of the army who will arrive tomorrow for an initial assessment of the situation, which will be followed by the necessary aid to be able to intervene promptly“.
Troina has become the centre of one of the most dangerous outbreaks in Sicily. It currently has three municipalities declared as red zones. Retirement homes and health facilities in Messina, Palermo and Sciacca, have also recorded peaks in people being contaminated.
The situation emerged despite alarms having been raised by associations and by the National Rapporteur for Prisoners and Persons Deprived of Liberty, Mauro Palma.
This raises a number of questions.
The first concerns the attention paid to such institutions in emergency situations such as this, and how much has been done to ensure preventive measures are in place. The practice of institutionalising older people is widespread in northern Italy, less so in the south. In his 2018 report, the Rapporteur estimated that in 2014 there were 218,576 persons in these institutions. It makes life easier for many families, but does it guarantee protection in emergency situations? Would it not be more appropriate to provide alternative, human rights based and personalised solutions? For persons with disabilities the issue is more dramatic, because they often do not have the possibility to choose where they live. Residential institutions still host 3,147 minors with disabilities and 51,593 adults with disabilities (data taken from the aforementioned report). It is a large number of people, often without family or abandoned by their relatives. Personalised solutions concerning their quality of life and the protection of their human rights, as set by the UN Convention on the Rights of Persons with Disabilities (CRPD), are totally disregarded. Often the practice of institutionalisation is based on a “protective” approach but, as we see in the case of a pandemic like the one we are experiencing, persons with disabilities are almost not protected at all.
The second question is clear. The CRPD takes a human rights-centred approach. It underlines the principles of equal opportunities and non-discrimination. It also recalls that disability is a social construct, which means that one billion persons worldwide are ‘disabled’ because of barriers, obstacles, discrimination, and a very strong negative social stigma built up over millennia by practices that denied their participation in society. It is no longer possible to accept existing forms of welfare that do not take rights-based approach. In particular, we cannot accept practices of segregation, which deny people’s citizenship, undermine their skills and potential, and reduce people to numbers on which to claim fees and funding. They should be progressively banned. Those resources should be used to keep people in their communities and to offer personalised solutions that respect dignity and ensure better quality of life.
Article 19 of the CRPD (independent living and inclusion in society) applies to all persons with disabilities. The Italian welfare system (or to be exact, the 21 regional welfare systems) did not try to apply the Convention, did not reformulate tools and services and did not define new objectives to be achieved, such as empowerment, full participation and full citizenship. The practice of welfare that arises in times of crisis, and that accepts, with inertia, outdated tools that are inadequate to promote the human rights of persons with disabilities, must be totally re-discussed. We must reformulate technical and cultural tools, staff skills and services.
The experience during this pandemic highlights this: persons with disabilities must enjoy the same rights and opportunities as other citizens, be included in all general policies and be protected in emergency situations.