In the UK are disabled people’s rights during the coronavirus pandemic at risk?
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Dr Ivanka Antova
The coronavirus pandemic is a tremendous challenge that we face as individuals and as a global community. Politicians and legislators are trusted to take timely and effective measures to protect individuals and prevent a public health crisis.
The World Health Organisation and the United Nations have warned that disabled people are at a higher risk of contracting the virus. And that little guidance has been provided on how they can effectively self-isolate and access health services.
Researchers have pointed out that disabled people face more significant barriers to accessing health care. And that the stigma around disability can further affect their prospects of receiving critical care. While the global coronavirus pandemic raises several practical, ethical, and legal challenges, it is essential that during a crisis, the human rights of disabled people are strengthened, not weakened. It is, therefore, imperative that all policy and legal responses to the crisis should be disability-inclusive.
What does the current legislation say about disabled people’s rights during the coronavirus pandemic?
The UK introduced the Coronavirus Act 2020 (CA 2020) in March after many public calls that urgent measures had been delayed. The CA 2020 gives extraordinary powers to public health officials, police officers, and immigration officers to detain, order, and remove any person for whom they have a ‘reasonable suspicion’ that they might be infected with the virus. Detailed analysis of the Act as a legal instrument is much needed. This is especially important from a human rights perspective as it is known that the current government has been at odds with established human rights principles. Hastily devised legislation may disturb the balance between individual rights and the necessity to protect public health. The disruption of established disability rights principles is the focus of this analysis.
Typically, local authorities have a duty to provide health and social care services to disabled people promoting their well-being under the provisions of the Care Act 2014. CA 2020 has essentially suspended The Care Act 2014. Schedule 12 of the CA 2020 on local authorities care and support states that ‘a local authority does not have to comply with any duties imposed by the [Care Act 2014]’. Local authorities no longer have the duty to assess people’s need for care and support, even though they would have been eligible for social care after an assessment in all other circumstances. In this sense, the CA 2020 represents a significant roll-back of decades of disability activism to ensure personal independence and well-being. It is a dangerous practice to suspend established disability rights without an equality impact assessment and without demonstrating that human rights have been protected at a time of crisis.
The Care Act 2014 is by no means a perfect piece of legislation but refers to the Human Rights Act 1998, which gives legal effect of the European Convention on Human Rights (ECHR). Instead of concrete rights corresponding to concrete legal duties, under the CA 2020 local authorities still have powers to provide health and social care assessments and target available resources to the most vulnerable people (see CA 2020, Schedule 12, section 10, para 2).
The legal semantics here is important. A legal duty means that a disabled person has a right, and that if the right is breached, a disabled person can ask for a legal remedy, take the authority to court, ask for compensation, etc. A power here means that a local authority is able to do something, but there is no requirement, there is no duty. The only exception is the requirement of local authorities to take measures to prevent a human rights violation. Barristers working with disability activists have already argued that the European Court of Human Rights has a very high threshold for what constitutes a violation since there is no explicit right to social care in the ECHR.
Other problems disabled people face during the coronavirus pandemic
The problems for disabled people’s rights extend beyond the nature and scope of the CA 2020. Equally problematic are the guidelines for health and care practitioners that have been released during the coronavirus pandemic Here I focus specifically on the National Institute for Health and Care Excellence (NICE) guidelines on critical care.
The NICE guidelines were issued on 20th March, and their purpose was to provide clarity for health and care practitioners on how to ensure the safety of patients in critical care and how to prioritize available National Health Service (NHS) resources. An essential example of care in the context of COVID-19 may be critical organ support, such as a ventilator. The guidelines proposed referring to the ‘clinical frailty scheme’ when making the difficult decision on who should be for critical care. Any patients scoring five or higher on the frailty scheme were deemed less likely to benefit from critical care. All people needing some personal care, or entirely depending on it, had an automatic score of five or higher. This essentially meant that disabled people with a learning disability or a chronic physical disability (who rely on a personal assistant) would not have been prioritized for critical care, even though their disabilities have no direct impact on how well they could recover from COVID-19.
Disability organizations and legal practitioners threatened a legal challenge for discrimination against disabled people, and the guidelines were consequently changed on 31st March. Now the NICE advice for healthcare practitioners is not to apply the critical frailty scheme to people with disabilities but to do an individual assessment instead. Even though this is a definite improvement, the problem with an individual assessment is that the stigma around disability and the barriers to healthcare disabled people face have not been addressed or changed.
Do the measures taken protect disabled people’s rights during the coronavirus pandemic?
The problems outlined above lead me to argue that the CA 2020 does not protect disability rights to the high level needed. It does not correspond to the greater need disabled people have for appropriate health and social care during the crisis. And that it cannot be considered a disability-inclusive response to the COVID-19 global pandemic. I am equally concerned about the myriad of guidelines that have emerged, such as the NICE guidelines, which demonstrate that disabled people’s rights have not been taken into consideration during the crisis.
Disabled people face stigma and negative attitudes that a global pandemic only exacerbates. Disability rights protection and enforcement should be an absolute priority during the COVID-19 crisis.