Oliver Lewis
A group of UN experts has demanded that governments “remain steadfast in maintaining a human rights-based approach to regulating this pandemic”. What does that mean about the rights and safety of disabled people, including those with intellectual disabilities living in institutions (large or small) or people detained in mental health units?
Catalina Devandas is the UN Special Rapporteur on the rights of persons with disabilities. She has issued a thundering rebuke to the mainstream global Covid-19 response, asserting that “little has been done to provide people with disabilities with the guidance and support needed to protect them during the ongoing COVID-19 pandemic, even though many of them are part of the high-risk group”.
Rights persist throughout the Covid-19 pandemic. The UN Convention on the Rights of Persons with Disabilities (“CRPD”) is a legally-binding treaty. Under its terms, governments must “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters”.
People with disabilities are particularly vulnerable to infection in these facilities given the risk of contamination of many people living together in a congregated way. Institutional settings remove autonomy and control and in the Covid-19 pandemic that includes activities such as handwashing, food preparation, availability of tissues and so on. People deprived of their liberty may already be less healthy than the general population.
In February 2020, Covid-19 found its way into a long-term residential care facility in Washington State. It infected 81 residents, 34 staff members, and 14 visitors. Sadly, 23 people died. A group of public health scientists published a paper in which they observed that, “once COVID-19 has been introduced into a long-term care facility, it has the potential to result in high attack rates among residents, staff members, and visitors.”
The scientists advised that substantial morbidity and mortality might be averted if all institutional care facilities take the following steps:
- Identify and exclude symptomatic staff members;
- Restrict visitation except in compassionate care situations; and
- Strengthen infection prevention and control guidance and adherence.
International human rights standards
The European Committee on the Prevention of Torture (CPT) has recently published a “Statement of Principles” relating to the treatment of persons deprived of their liberty in the pandemic. The CPT’s advice in summary is as follows:
- World Health Organization and clinical guidance must be implemented in all places of detention;
- Staff availability should be reinforced;
- Persons deprived of their liberty should receive information;
- The authorities should find alternatives to deprivation of liberty. In the disability context, this includes reassessing the need to continue psychiatric detention and transferring people out of social care facilities into community care;
- People should be tested Covid-19;
- Any necessary restrictions on contact with the outside world, including visits, should be compensated for by increased access to alternative means of communication such as telephone or web-based communications;
- If a person is isolated, meaningful human contact should be provided every day;
- Monitoring bodies (such as the CQC) should maintain access; and monitoring bodies must promote the “do no harm” principle by taking precautions.
On 23 March 2020, WHO-Europe published “Preparedness, prevention and control of COVID-19 in prisons and other places of detention”. The 40-page document covers prisons, immigration detention settings, and children and young people’s detention but does not refer to psychiatric hospitals and social care institutions. This is a staggering omission, given that people are deprived of their liberty in those places too. Devandas’s rebuke was issued before the WHO-Europe document was published, but this is a good example of how an intergovernmental organisation seems to have abandoned the concerns of people with disabilities.
That said, the guidance seeks to be anchored in the human rights framework which “provides guiding principles in determining the response to the outbreak”. Its document makes important points relevant for people in disability-related institutions, including enhanced consideration to non-custodial measures; establishing an up-to-date multi-sectoral coordination system that keeps staff well-informed and guarantees that all human rights in the facilities are respected; and screening at point of entry to the institution. The document places emphasis on training staff on basic disease knowledge, including pathogen, transmission route, signs and clinical disease progression, hand hygiene practice and respiratory etiquette, appropriate use of, and requirements for, personal protection equipment, as well as environmental prevention measures including cleaning and disinfection.
Independent inspection
Devandas has warned that limiting contact with visitors such as family and friends may result in the risk of those deprived of their liberty becoming “unprotected from any form of abuse or neglect in institutions”.
To address the risk that the rights of people deprived of their liberty would diminish in the absence of robust independent monitoring, I would respond that States have an obligation (per Article 16(3) of the CRPD as well as the Optional Protocol to the UN Convention against Torture) to ensure that facilities are “effectively monitored by independent authorities”. The obligation is not suspended during the Covid-19 pandemic.
To respond to the changed circumstances, inspectorates should adjust the method of monitoring institutional facilities, including by way of video conferencing. Mental health and social care commissioners should consider assigning one existing institutional staff member to act as quasi-independent in-situ advocate reporting by phone or video to the inspectorate. While not ideal, this would provide a safeguard for patients/residents when other means of reaching them may be temporarily impossible.
WHO-Europe has noted that the pandemic must not be used as a justification for objecting to external inspection. Some weeks ago, the UN Subcommittee for the Prevention of Torture wrote to the UK about compulsory quarantine for Covid-19. It advised that both inspectorates and the institutions being inspected need to adapt. Adaptations could include keeping distant when interviewing people in private, subjecting inspectors to medical checks and other forms of inspection and restriction to ensure the integrity of the quarantine.
Non-discrimination in healthcare
In the context of Covid-19, Devandas has insisted that people with disabilities, “deserve to be reassured that their survival is a priority”. This is a response to the justified fear that many people with disabilities and their friends and families feel about being denied treatment for Covid-19, for example the use of a ventilator, should they require such care, or that they will be assigned “Do Not Resuscitate” status based on their disability.
Article 25 of the CRPD sets out the right to health of people with disabilities. Two points are important. First, that the same range, quality and standard of healthcare must be provided as it is to others. Second, that there should be no denial of healthcare or food and fluids on the basis of disability.
The International Disability Alliance, a global NGO, has emphasised that governments should ensure that people with disabilities are not “left behind or systematically deprioritized” in the Covid-19 response. Communications by healthcare providers about the stage of the disease and any procedures must be to the disabled person themselves and through accessible means and modes of communication. This poses difficulties if the disabled person requires a support worker for communication and interpretation and the hospital does not permit an accompanying person for safety reasons. Any tension between accessibility and safety must be resolved at the local level. The inclusion of views of, and communication with, the person with disabilities and their friends, family and support staff will be key.
These sentiments were underlined by a broad range of UN experts who on 26 March 2020 published a joint statement reminding governments to implement life-saving interventions in a way that prevents discrimination. Among the people highlighted were people with disabilities, people who live in residential institutions or who are in detention.
Shifting away from institutional settings
It is imperative for governments to follow WHO guidance to take steps to shift people out institutional settings if at all possible – including from prisons, psychiatric hospitals and social care settings. Congregated settings present an immediate and obvious risk. Social protection measures to meet the needs of people with disabilities must be maintained so that tragedies such as the reports of the Spanish army finding elderly people dead in their beds in retirement homes can be prevented.
Dunja Mijatović, the European Commissioner for Human Rights, has recently observed how the Covid-19 situation “brings to light the failings of large, institutional settings”. She observes that a “social care system which privileges individualised support to older persons, while promoting their full inclusion in the community, must be at the heart of these reforms.”
The same applies in relation to people with disabilities. Article 19 of the CRPD sets out the right to live independently and be included in the community. Shifting the locus of care for people with disabilities from institutional settings to the community, ensuring availability of and access to services for the general public (such as mainstream education, regular housing stock and so on) and providing specific services that meet individual need are no longer mere policy niceties but elements of the Article 19 right.
When we look back on this pandemic, states should redouble efforts to secure each person’s right to live independently and be included in the community. Institutional settings that warehouse people with disabilities are breeding grounds for infection. They also violate international human rights law.
Oliver Lewis is a barrister at Doughty Street Chambers, London, and a part-time Professor of Law and Social Justice at the University of Leeds. He tweets at @DrOliverLewis. This article is an adapted version of a blogpost that has been published on the website of Doughty Street Chambers.
Image: Marco Verch CC-BY 2.0