COVID-19 has hit hard the people with disabilities who live in social care homes, with devastating consequences in many such institutions worldwide. Even if they have avoided contracting the virus, they have experienced serious violations of the rights to personal liberty, privacy and family life to a larger extent than the rest of the population, as a result of anti COVID-19 measures.

Aggravated risks for people in institutional care come primarily from the organisation and regime of institutional living. A typical institution is characterised by rigid routines and segregation from the community, and by the accommodation of people with common personal characteristics (eg, intellectual or psychosocial disability, physical disability, multiple disabilities, children, elderly). The residents of these institutions are effectively deprived of their liberty, often being under state guardianship or guardianship of another person, which strips them of the right to choose where to live and with whom. Institutionalisation is often prolonged and sometimes results in a lifelong deprivation of liberty, due to inaccessible or ineffective legal remedies and the lack of effective deinstitutionalisation programmes. Another common trait of social care institutions, and social welfare systems overall, is that the concept of secrecy is deeply ingrained in their nature and functioning, and thus very hard to penetrate for the interested public, researchers, media and advocates. The ensuing lack of public scrutiny and especially independent monitoring contribute to the vulnerability of institutionalised people who are under absolute control of their caregivers.

Institutions for people with disabilities in Southeast Europe, primarily in Serbia, Bosnia, Croatia, Bulgaria and Romania, are widely known for dilapidated conditions, overcrowding and occasional reports about abuse of residents, mainly children. Overcrowding and poor hygiene are factors that can contribute to residents being victims of inhuman and degrading treatment (Stanev v. Bulgaria 2012). Transmission of infectious diseases is much easier in closed facilities, where large numbers of people live together in unhygienic conditions. For those reasons, social care institutions are often places where infections, such as hepatitis or scabies, are easily spread among residents.

Following the onset of the COVID-19 pandemic, in an effort to prevent infections in social care homes, the authorities in Serbia sealed facilities, prohibiting visits and depriving residents of the possibility to leave institutions, even to take a walk. These measures have been in effect for six months: they have not prevented outbreaks of coronavirus in institutions, but they have deprived residents of their personal liberty, as well as the possibility to maintain personal contacts, including staying in touch with friends and relatives who live in the open community. These limitations of human rights have been longer-lasting and applied in more restrictive ways than limitations on the rest of the population. In other words, disabled people in Serbia have lived under curfew for the entire time to date of the COVID-19 pandemic.

Many carers who work in social care institutions have been infected and taken sick leave, which has led to serious understaffing. The shortage of staff, which is common in the institutions in these countries even in non-pandemic times, always results in a lack of individualised care, and sometimes in inhuman and degrading treatment. Independent monitoring by local and international NGOs, and the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, on his visit to Serbia and Kosovo, have uncovered evidence that a shortage of staff leads to excessive use of mechanical and chemical restraints, and isolation. The isolation and fixation of a person with intellectual or psychosocial disabilities can cause extreme levels of suffering, eventually leading to the violation of the right to be free from torture. Despite the increased risk of maltreatment, the National Mechanism for Prevention of Torture in Serbia has not conducted a single visit to social care homes since the outbreak of the virus, on a pretext of infection prevention. Therefore, not only has the pandemic exacerbated the vulnerability of disabled people living in institutions, it has also curtailed some of the independent monitoring mechanisms.

In understaffed, overcrowded and dilapidated institutions, the risk of violation of basic rights of persons with disabilities increases. However, even new institutions with more staff still generate exclusion from the wider community, while their potential to prevent COVID-19 from entering their premises remains low. For example, in spite of significantly higher budgets, better material conditions and higher quality of health protection, in social care homes for people with disabilities and nursing homes in France and Belgium the death toll has been appalling.

Lessons learned?
This crisis should be seen as a dress rehearsal for what might come in the future. Institutions in which disabled people live have been shown to be highly penetrable by infection regardless of the quality of care provided and material conditions. It seems that the only reliable prevention is implementation of deinstitutionalisation policies, and possibly the creation of emergency plans for transferring people to community-based housing while providing necessary support and services in times of crisis.

However, the right to live in a family, or independently, and to be included in the community goes far beyond a mere measure to respond to a crisis. More than two decades ago the US Supreme Court labelled institutionalisation as a form of discrimination on the basis of disability: exclusionary societal structures and attitudes result in the removal of people with disabilities from the community and in their placement in segregated settings. Similar approach to institutionalisation became part of international human rights law with the adoption of the Convention on the Rights of Persons with Disabilities (CRPD).

Despite the prevailing view that the CRPD does not establish any new rights, its prominent educational and transformative characters emerge from its endorsement and interpretation of already existing rights in the context of disabled people. Given this, it is crucial to note that article 19 CRPD and the accompanying General Comment No. 5 endorse the right of disabled people to independent living and inclusion in the community. Any type of residential care that replicates institutional culture, regardless of its size, is considered to violate the rights of disabled people, especially children (para 16(c)).

The current coronavirus crisis has impacted disabled people in residential institutions in an unprecedented way. Arguably, their health and survival have never been at higher risk since the Second World War. Seen in this light, governments worldwide should adopt a paradigm shift as prescribed by the CRPD, and make the right to live independently or in a family, and be included in the community, a reality for disabled people, before another pandemic hits.

Cite as: Stefanovic, Lazar. "Impact of COVID-19 on the Rights and Lives of Disabled People Living in Social Care Institutions ", GC Human Rights Preparedness, 24 September 2020, https://gchumanrights.org/preparedness/article-on/impact-of-covid-19-on-the-rights-and-lives-of-disabled-people-living-in-social-care-institutions.html