Long Covid sufferers risk being left behind as restrictions lifted
In Are Approximately With Covid Ireland People 100,000 Long Living
The end of most Covid-19 public health measures has been welcomed by many sectors of Irish society. But some people are at risk of being left behind in the rush to return to normal.
For those with long Covid, the phrase ‘learning to live with the virus’ takes on a whole new meaning. Common symptoms of this post-viral condition include fatigue, shortness of breath, and difficulty concentrating.
Recent data from the UK’s Office for National Statistics estimates that 2% of people living in private households (including children) self-reported experiencing long Covid — defined as symptoms persisting for more than four weeks after the first suspected coronavirus infection that were not explained by something else. Some 40% of those people were thought to have contracted Covid-19 over a year previously and were still living with its effects. It seems reasonable to presume that comparable rates of long Covid also exist in Ireland. This would amount to approximately 100,000 people in the State living with the condition.
Those with chronic illnesses such as long Covid fall within the definition of ‘persons with disabilities’ under the UN Convention on the Rights of Persons with Disabilities (CRPD). Ireland was an early signatory of the CRPD and ratified it in 2018, meaning that it must ensure that its laws and policies comply with the equality and non-discrimination requirements of the CRPD. The CRPD is based on the principles of respect for difference and acceptance of persons with disabilities as part of human diversity and humanity as well as their right to full and effective participation and inclusion in society. People with disabilities are to be recognised as ‘subjects’ under the law who are rightsholders on an equal basis with others.
As demonstrated by the award-winning Netflix documentary, , disabled people have been fighting for their rights since long before the pandemic began. But the crisis has demonstrated how we all have the potential to become disabled at any point in our lives. We can find strength in that shared vulnerability. It becomes evident that disability rights are human rights.
We saw that governments around the world, including our own, implemented previously unimaginable population-level adaptations to lower the risk of infection and prevent the health service becoming overwhelmed. While the impact of the pandemic was hugely damaging in a great many respects, it also allowed us to imagine a different political and social dynamic.
Large sections of the population transitioned to working from home and could in many cases avail of flexible working arrangements, education was provided remotely, telemedicine became an essential aspect of healthcare provision, and financial support for the unemployed and those who could not work due to illness was put in place or increased.
Yet it has not been acknowledged that many of these adaptations are versions of ‘reasonable accommodations’ (modifications or adjustments made so that an individual can enjoy and exercise their rights on an equal basis with others) which had been hard fought for by persons with disabilities. Our society has therefore benefitted from the decades of advocacy which they engaged in. But we must also recognise the injustice and hypocrisy of the State in authorising these adaptations in light of the pandemic when so many similar requests for adaptation and flexibility had been previously dismissed as unrealistic or too much of a financial or societal burden.
As restrictions decrease, we must ensure that the changes which have taken place in terms of how our society operates are not rolled back, but are instead embedded in a broader reform programme which uses the CRPD as its benchmark and, in doing so, ensures that those with long Covid, as well as the broader disability community in Ireland, are not once again left behind. The publication of the Government’s National Remote Working Strategy last September was a welcome move in the right direction, proposing a right to request remote work, as well as the infrastructural investment necessary to ensure that these new ways of working can be supported and maintained in the longer term. But reforms should not be piecemeal and limited to those that meet the needs and wishes of those without disabilities.
The State should ensure that those who are particularly at risk of contracting Covid, and later living with long Covid, continue to be prioritised in public health measures such as vaccination, as well as social and financial supports which ensure that they do not have to take undue risks with their health. Much of this can be achieved by Ireland meeting its obligations under the CRPD. For example, persons with intellectual disabilities and those with psychosocial disabilities (otherwise referred to as ‘mental illnesses’) are at increased risk of death should they contract Covid. These groups are also more likely to live in residential or congregated settings which are themselves a risk factor for contracting Covid given the challenges of social distancing, deficiencies in staff training, and inadequate hygiene and sanitation. Yet the HSE’s commitment over a decade ago to close all such settings by 2018 has not been met. This failure to deinstitutionalise is in breach of Ireland’s obligation to vindicate the right of persons with disabilities to live independently and be included in the community - with chosen supports and services - under Article 19 of the CRPD.
The pandemic has also revealed the impact of digital exclusion (i.e. unequal access to the internet and other technology, as well as a lack of digital skills) on individuals’ ability to adapt to shifts in ways of living, and therefore remaining connected to their broader community. In light of the impact that digital exclusion can have on a person’s employment, health and education, investment which ensures equality of internet connection and digital training must therefore be made.
Consistent with the approach taken during the pandemic, the Government should make provision for a comprehensive system of illness benefit which ensures a dignified standard of living for those who require it. Such support should also consider the added financial burden which accompanies many impairments due to the need for personal assistance, assistive devices and technology, transport, and medicines, as set out in the Government’s recent report on the cost of disability in Ireland. Pathways of support, as well as incentives for employers, should also be established to assist those who may have been absent from the workforce due to long Covid and now wish to return to do so.
In order for these measures to be effective and meet the needs and rights of those with long Covid, accurate and disaggregated data should be gathered on the number of people who are living with long Covid, as well as their support needs. It is also crucial that the Government and other State actors closely consult with and actively involve persons with disabilities in all aspects of legal and policy planning, so as to ensure that new policies and practices are fit for purpose and based on their lived experience.
Ireland has an ignoble history of discrimination, segregation, and abuse of persons with disabilities. We must acknowledge the past and view the challenge presented by long Covid as an opportunity for large-scale reform that benefits not just persons with disabilities, but every member of society. Timely action is now required by the Government to secure a better future for post-pandemic Ireland and all those whose lives are forever changed by Covid-19.