This is a summary of guidance from international human rights bodies in relation to the protection of the rights of people with disabilities in the coronavirus pandemic. By "people with disabilities" I include people with intellectual disabilities, cognitive disabilities (such as dementia), autism and mental health issues.
This post was updated on 2 April 2020. I have added a bibliography.
It is hoped this post will be of benefit to people with disabilities, their families, carers and advocates. It may also be useful to organisations providing services as well as independent inspectorates of places of detention.
A group of UN experts published a joint statement on 16 March 2020, calling on states “to remain steadfast in maintaining a human rights-based approach to regulating this pandemic”. What does that mean in relation to disability? On the same day, Catalina Devandas, the UN Special Rapporteur on the rights of persons with disabilities, issued a statement which was endorsed by the UN experts on discrimination against persons affected by leprosy and their family members, Alice Cruz, the expert on rights of older persons, Rosa Kornfeld-Matte.
Devandas's statement was strongly worded: “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”.
I want to address 4 topics in this post: (A) Information accessibility; (B) Social distancing and isolation; (C) Institutional care facilities; and (D) Equality in healthcare.
At the outset, please note that Article 11 of the UN Convention on the Rights of Persons with Disabilities (“CRPD”) sets out a duty on states to take “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”. Rights persist throughout the coronavirus pandemic.
A) Information accessibility
The state obligation on accessibility is covered in Article 9 of the CRPD, which has been explained in the CRPD Committee’s general comment number 2. The Committee has emphasised that healthcare services and information must be accessible to people with disabilities.
Catalina Devandas has called for the information about how to prevent and contain coronavirus to be “accessible to everyone", explaining that, "[p]ublic advice campaigns and information from national health authorities must be made available to the public in sign language and accessible means, modes and formats, including accessible digital technology, captioning, relay services, text messages, easy-to-read and plain language."
Human Rights Watch has said that,
“All information about COVID-19 should be accessible and available in multiple languages, including for those with low or no literacy. This should include qualified sign language interpretation for televised announcements, as Taiwan has done; websites that are accessible to people with vision, hearing, learning, and other disabilities; and telephone-based services that have text capabilities for people who are deaf or hard of hearing. Communications should utilize plain language to maximize understanding. Age appropriate information should be provided to children to help them take steps to protect themselves.”
Dunja Mijatović, the Council of Europe Commissioner for Human Rights has underlined the importance of “transparency and accessibility” of information about coronavirus.
In the context of prisons (see "C: Institutional settings", below) WHO-Europe says that it is
"... absolutely essential to engage the prison population in widespread information and awareness-raising activities, so that people in prison/detention and visitors are informed in advance and understand the procedures to be adopted, why they are necessary, and how they are to be carried out. It is especially important that any potential restrictive measures are explained and their temporary nature emphasized."
Global WHO has also recommended the following:
- Include captioning and, where possible, sign language for all live and recorded events and communications
- Convert public materials into “Easy Read” format so that they are accessible for people with intellectual disability or cognitive impairment
- Develop accessible written information products by using appropriate document formats, (such as “Word”), with structured headings, large print, braille versions and formats for people who are deaf blind
- Include captions for images used within documents or on social media.
- Use images that are inclusive and do not stigmatize disability
- Work with disability organizations, including advocacy bodies and disability service providers to disseminate public health information.
B) Social distancing and isolation
It has been suggested that “social distancing” is the wrong phrase. While we must keep our bodies apart from others, we need not be distant from each other in our hearts and minds. This is particularly important for people with disabilities who may already be segregated or isolated from the community. Article 19 of the CRPD sets out the right to live independently and be included in the community. Perhaps "physical distancing" is a better phrase.
People with disabilities are at higher risk of contracting coronavirus because of “barriers accessing preventive information and hygiene, reliance on physical contact with the environment or support persons, as well as respiratory conditions caused by certain impairments”, according to the International Disability Alliance (“IDA”). They may also have an increased risk of a more severe response if they contract the disease due to underlying conditions and already inaccessible healthcare systems. The WHO adds more barriers, including implementing basic hygiene measures, such as hand-washing because hand-basins or sinks may be physically inaccessible, or a person may have physical difficulty rubbing their hands together thoroughly.
WHO adds that "depending on underlying health conditions, people with disability may be at greater risk of developing more severe cases of COVID-19 if they become infected. This may be because of: COVID-19 exacerbating existing health conditions, particularly those related to respiratory function, immune system function, heart disease or diabetes" and "barriers to accessing health care."
Catalina Devandas has observed how social distancing and self-isolation “may be impossible for those who rely on the support of others to eat, dress and bathe”. She calls for states to put into place financing measures for people with disabilities. Those providing care, including relatives, “may also require reasonable accommodation to provide support to people with disabilities during this period”. The right to non-discrimination whereby a failure to provide reasonable accommodation (per Article 5 and the definitions in Article 2 of the CRPD), is an interesting way of framing the need as a right.
Devandas has advised people with disabilities to take control and be “a bit aggressive”, for example, by demanding that visitors wash their hands when they enter their homes.
C) Institutional settings
By “institutional settings” I include psychiatric hospitals, social care homes, elderly person's homes, group homes and prisons. 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. We know from the likes of Foucault and Goffman that institutions remove autonomy and control and in the coronavirus pandemic that includes activities such as handwashing, food preparation, availability of tissues and so on. On top of that, people living in institutional settings may already be less healthy than the general population (on this point in the context of prisons, this article is informative).
The UN High Commissioner for Human Rights, Michelle Bachelet, says that "governments should address the situation of detained people in their crisis planning to protect detainees, staff, visitors and of course wider society".
In February, coronavirus was introduced into a long-term residential care facility in Washington State. It resulted in cases among 81 residents, 34 staff members, and 14 visitors. Sadly, 23 persons 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 now:
- Identify and exclude symptomatic staff members;
- Restrict visitation except in compassionate care situations; and
- Strengthen infection prevention and control guidance and adherence.
On 20 March 2020, the European Committee on the Prevention of Torture (CPT) published a “statement of principles” relating to the treatment of persons deprived of their liberty in the pandemic (also available in French and Russian). In summary, the CPT’s advice is as follows:
- WHO 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; transferring people out of social care facilities into community care.
- People should be tested coronavirus;
- 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; and
- Monitoring bodies (such as the Care Quality Commission) should maintain access; and monitoring bodies must promote the “do no harm” principle by taking precautions.
Responding to reports of institutional settings banning contact with the outside world, Dunja Mijatović said on 2 April 2020 that, "isolation must be mitigated as much as possible, for example by increasing the use of accessible forms of electronic communication."
Urgently transferring people out of institutional settings is a point reiterated in a joint statement of 1 April 2020 by the Chair of the CRPD Committee and the Special Envoy of the UNSG on Disability and Accessibility, who call on states to, "accelerate measures of deinstitutionalization of persons with disabilities from all types of institutions."
WHO-Europe has published an "interim" document "Preparedness, prevention and control of COVID-19 in prisons and other places of detention". The document is dated 15 March but was published on 23 March 2020. It covers prisons, immigration detention settings, and children and young people’s detention estate. The 40-page document does not refer to psychiatric hospitals and social care institutions, a staggering omission given that people are deprived of their liberty in those places too.
WHO-Europe says that the "human rights framework provides guiding principles in determining the response to the outbreak". Its document makes important points relevant for disabled people in institutional settings, including:
- Enhanced consideration should be given to resorting to non-custodial measures (p.4). For disability institutions, this means discharging people into the community, and considering a moratorium on new admissions to psychiatric hospitals;
- To effectively tackle a disease outbreak, state authorities must establish an up-to-date multi-sectoral coordination system that keeps staff well-informed and guarantees that all human rights in the facilities are respected (pp.8 and 15);
- The pandemic must not be used as a justification for objecting to external inspection (p.5);
- Screening at point of entry to the institution should be available: health-care and public health teams should undertake a risk assessment of all people entering the prison, irrespective of whether or not there are suspected cases in the community. This includes detainees, staff and visitors (p.8); and
- Training of 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 ("PPE"); environmental prevention measures, including cleaning and disinfection (p.14).
Catalina Devandas has noted that limiting contact with visitors such as family and friends may result in the risk of patients / inmates / residents becoming “unprotected from any form of abuse or neglect in institutions”.
As a response to the heightened risk of exploitation, violence and abuse in the absence of independent monitoring, States have an ongoing 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”. Such inspectorates will have to adjust how they monitor 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 some sort of safeguard for patients/residents.
In her 26 March 2020 statement, the UN High Commissioner of Human Rights gave examples of alternative measures when visits are have to be restricted, "such as setting up expanded videoconferencing, allowing increased phone calls with family members and permitting email."
On 14 February 2020, the UN Subcommittee for the Prevention of Torture wrote to the UK's National Preventive Mechanism (which means inspectorate, which in the health and social care context is the Care Quality Commission) about compulsory quarantine for coronavirus. It said:
"adaptations to normal working practises, in the interests of those in quarantine, those undertaking the visit, and the general interest in halting the spread of the illness. For example, the opportunity to interview in private may reasonably be conducted by methods which prevent the transmission of infection, and members of the NPM accessing places of quarantine might legitimately be subject to medical checks and other forms of inspection and restriction to ensure the integrity of the quarantine, as would be the case for others servicing the needs of those being detained." (para. 9) [An "NPM" is a National Preventive Mechanism which is the phrase used in the Optional Protocol to the UN Convention against Torture. It means an independent inspectorate such as the Care Quality Commission]
Right to live in the community
In a statement about the rights of older persons, Dunja Mijatović takes the opportunity to make an important macro point, which is that the pandemic “brings to light the failings of large, institutional settings”. She goes on to observe 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.”
In a further statement on 2 April 2020, she says
"While residents in such institutions often face neglect and inadequate health care at the best of times, this pandemic has unfortunately brought to the forefront the additional serious health risks persons with disabilities are exposed to in such settings."
D) Non-discrimination in healthcare
Article 25 of the CRPD sets out the right to health of people with disabilities. It includes the provision of the “same range, quality and standard” of healthcare as others (Art. 25(a)) and the prevention of “discriminatory denial of health care or health services or food and fluids on the basis of disability” (Art. 25(f)).
In the context of coronavirus, states must ensure equal access to emergency services for people with disabilities. Devandas says that people with disabilities “deserve to be reassured that their survival is a priority”. The IDA emphasises that states “must ensure that persons with disabilities are not left behind or systematically deprioritized in the response to the crisis”. Communications by the healthcare provider about the stage of the disease and any procedures must be to the disabled person themselves and through accessible means and modes of communication.
On 26 March 2020, a group of UN special rapporteurs published a joint statement reminding states of the principle of non-discrimination in the provision of life-saving interventions. Among the groups highlighted are people with disabilities, people who live in residential institutions or who are in detention. They call on states to provide "additional social protection measures so that their support reaches those who are at most risk of being disproportionately affected by the crisis."
On 27 March 2020, the UN independent expert on the enjoyment of all human rights by older persons Rosa Kornfeld-Matte published a statement. Among other things, she said that, "Triage protocols must be developed and followed to ensure such decisions are made on the basis of medical needs, the best scientific evidence available and not on non-medical criteria such as age or disability."
Since mid March 2020, several international human rights personnel and mechanisms have issued guidance and statements about the rights of people with disabilities in the coronavirus pandemic. These statements emanate from binding human rights law and states must take them into account.
Here is a list of sources, in chronological order
13 March 2020 - Dunja Mijatović, Council of Europe Commissioner for Human Rights, "We must respect human rights and stand united against the coronavirus pandemic" -https://www.coe.int/en/web/commissioner/-/we-must-respect-human-rights-and-stand-united-against-the-coronavirus-pandemic
16 March 2020 - Several UN experts, " COVID-19: States should not abuse emergency measures to suppress human rights" - https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25722&LangID=E
17 March 2020 - Catalina Devandas, UN Special Rapporteur on the rights of persons with disabilities, "COVID-19: Who is protecting the people with disabilities?" - https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25725&LangID=E
19 March 2020 - Human Rights Watch, "Human Rights Dimensions of COVID-19 Response" - https://www.hrw.org/news/2020/03/19/human-rights-dimensions-covid-19-response
19 March 2020 - International Disability Alliance, "Toward a Disability-Inclusive COVID19 Response: 10 recommendations" - http://www.internationaldisabilityalliance.org/content/covid-19-and-disability-movement
25 March 2020 - Michelle Bachelet, UN High Commissioner for Human Rights, "Urgent action needed to prevent COVID-19 rampaging through places of detention" - https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25745&LangID=E
26 March 2020 - Several UN experts, "No exceptions with COVID-19: Everyone has the right to life-saving interventions” - https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25746&LangID=E
26 March 2020, WHO, "Disability considerations during the COVID-19 outbreak" - https://www.who.int/who-documents-detail/disability-considerations-during-the-covid-19-outbreak
27 March 2020 - Rosa Kornfeld-Matte, UN Independent Expert on the enjoyment of all human rights by older persons, “'Unacceptable' – UN expert urges better protection of older persons facing the highest risk of the COVID-19 pandemic" - https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25748&LangID=E
1 April 2020 Chair of the CRPD Committee and the Special Envoy of the UNSG on Disability and Accessibility, "Persons with Disabilities and COVID-19" - https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDStatements.aspx
2 April 2020 - Dunja Mijatović, Council of Europe Commissioner for Human Rights, "Persons with disabilities must not be left behind in the response to the COVID-19 pandemic" - https://www.coe.int/en/web/commissioner/-/persons-with-disabilities-must-not-be-left-behind-in-the-response-to-the-covid-19-pandemic
I am updating this page as other statements are issued. Please email me information: email@example.com or Twitter @DrOliverLewis. To contact my clerk please send an email to Emily Norman firstname.lastname@example.org.
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.