COVID-19 (Coronavirus disease) began spreading through Europe at the beginning of 2020. It soon became apparent that it was having a disproportionate impact on disabled people – both those living in the community and those living in institutions.

International organisations responded with various guidelines and statements on how to protect the rights of disabled people during the pandemic. See, for example, the World Health Organisation’s (WHO) Guidelines on ‘Disability Considerations during the COVID-19 Outbreak’ (see here); the UNICEF Guidelines on COVID-19 for children and adults with disabilities (see here); and the Joint Statement by the Chair of the UN Committee on the Rights of Persons with Disabilities, on behalf of the Committee on the Rights of Persons with Disabilities and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility on Persons with Disabilities and COVID-19 (see here). In 2022, the European Disability Expertise network published a series of country reports and a summary report on the impact of COVID-19 on disabled people.

Initially, ENIL’s focus was on sharing information and resources for disabled people using personal budgets/direct payments and employing their personal assistants, and who were struggling to retain their independence and to continue living safely in their own homes. We also helped raise awareness about the effect of COVID-19 on disabled people, by collecting testimonies. The Euronews report on the effect of COVID-19 on disabled people, with testimonies by ENIL members from Spain and Belgium is available here. Our former Board member Stelios Kympouropoulos, now a Member of European Parliament, was also interviewed by Euronews.

Together with other organisations advocating for the rights of disabled people, we sent an urgent appeal to ensure equal access to COVID-19 medical treatment for residents of Sasca Mică Centre and other institutions for disabled and older persons in Romania (see here).

In April 2020, endorsed by the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of seven disability rights organisations launched a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor”. Its members were: ENIL, Validity Foundation, International Disability Alliance, Disability Rights International, Human Rights Centre at the University of Pretoria, the International Disability and Development Consortium and Disability Rights Fund/Disability Rights Advocacy Fund.

COVID-19 Disability Rights Monitor undertook rapid independent monitoring of state measures concerning disabled people. The first element of this global initiative was the launch of two surveys requesting official information from governments and requesting the testimonies of disabled people, their families and their representative organisations. The surveys aimed to collect information about what states are doing to protect core rights of disabled people, including the rights to life, access to health and essential services. The data collected through the surveys between April and August 2020 can be explored on the COVID-19 DRM Dashboard.

In October 2020, the results of the survey were analysed in a global report, entitled “Disability rights during the pandemic: A global report on findings of the COVID-19 Disability Rights Monitor”. The report is available here and as an Easy to read version.

In addition to exposing serious rights violations during the COVID-19 pandemic through personal testimonies of disabled people and their families, the COVID-19 Disability Rights Monitor encouraged establishment of “the working group on deinstitutionalisation, including emergency deinstitutionalisation”. The working group was formed by the Committee on the Rights of Persons with Disabilities in September 2022, and launched the process of drafting the global guidelines on deinstitutionalisation, including in emergencies.

The COVID-19 Disability Rights Monitor initiative was closed in December 2021. Its final statement is available here. Six of the members (ENIL, Validity Foundation, International Disability Alliance, Disability Rights International, Human Rights Centre at the University of Pretoria and Disability Rights Fund/Disability Rights Advocacy Fund), joined by Inclusion International and Transforming Communities for Inclusion – TCI Global, continued collaborating as the “Global Coalition on Deinstitutionalisation – GC-DI”. GC-DI has been providing support to the CRPD Committee in the process of drafting the global guidelines on deinstitutionalisation.