The inequality pandemic: making COVID-19 responses disability friendly

Yan Cheng, a sixteen-year-old Chinese boy with cerebral palsy, was found dead in January after he had been left at home alone because his father – and sole carer – was quarantined because he was suspected of having contracted coronavirus (COVID-19).

This story, which was widely shared by media outlets globally at the outset of the COVID-19 outbreak in China, shows that people with mental and physical disabilities are often hit harder during health emergencies than others and their mortality rate is higher because national responses lack specific provisions that address their needs.

How do COVID-19 health emergency responses exacerbate inequality for people with disabilities?

About 15% of the world’s population, or over a billion people, has some form of disability and 80% of people with disabilities live in developing countries. Evidence suggests that health emergencies like the COVID-19 pandemic[iv] worsen the institutional, environmental and attitudinal barriers that people with disabilities face.

This is because the restrictive containment-to-mitigation measures that governments are implementing (including physical distancing, self-isolation or the lockdown of entire towns and countries) risk undermining their basic right to access essential services and threaten their health and wellbeing, particularly in the following three ways:

1. Limited access to communication and information

The dissemination of public health information is mostly geared towards the general public, without any specific consideration for how people with mental or physical disabilities communicate, access, or implement information.

For example, daily COVID-19 government TV updates don’t always include narrative captioning for visually impaired people or a sign language interpreter for people with hearing difficulties. While governments understandably leverage technology to send out daily text messages with vital public health information on preventative hygiene or other measures, people with visual impairments may miss out, just like in Sierra Leone during the Ebola outbreak, where the government’s public awareness campaign was inaccessible for people with disabilities.

During lockdown, communicating with others has become more challenging as we use face masks or almost exclusively rely on our phones to video chat and text. This leaves those who rely on seeing someone’s face to communicate or can’t use a phone more isolated and at risk of neglect, especially high in countries where people with disabilities are most affected by the mobile divide.

2. Increased economic constraints

People with disabilities are more likely to be unemployed or earn less. A lack of targeted financial support or exclusion from safety nets and social protection initiatives during the crisis exposes them and anyone who they may financially depend on a higher level of poverty and deprivation because in addition to expenses for drugs, assistive devices or personal assistance, they now also face potentially skyrocketing costs for protective equipment or sanitisers for themselves and their carers. And if they do live on their own, they may not have enough savings to buy sufficient supplies of food and medicines, especially if food prices increase during the pandemic.

A recent international survey on the impact of COVID-19 on people with disabilities found that they are very likely to be disadvantaged when it comes to accessing food supplies because they may be unable to get to food distribution points or wait in long queues, or to deal with large crowds. Not being able to access basic supplies can increase stress and anxiety for all, but particularly for those that have pre-existing mental health conditions.

3. Disruption to health and social services

COVID-19 stretches the capacity of health systems to continue to provide essential care to the limit. But those that rely on specialist care and support, like people with disabilities, now really feel the consequences of this extra pressure.

Current containment measures and the redeployment of the health workforce to tackle the health crisis further increase the risk of neglect, inadequate care or even death among people with disabilities, if, for example, their carers cannot access protective equipment or have to quarantine themselves, which potentially leaves people with disabilities abandoned at home or in care facilities.

Added to this is the particularly dire situation in institutions, psychiatric facilities or prisons due to the high risk of contamination and lack of external oversight: “Limiting their contact with loved ones leaves people with disabilities totally unprotected from any form of abuse or neglect in institutions”, according to the UN Human Rights Council’s Special Rapporteur on the rights of persons with disabilities Catalina Devanadas.

A more inclusive COVID-19 response is a chance to “build back better”

Despite the enormous burden the pandemic poses on our health, social and economic systems, building a more inclusive health emergency response is not only possible, but also an opportunity to put new systems in place that will have lasting benefits for vulnerable communities.

Most of the governments that Options works with have committed to leaving no one behind and have active civil society-led disability movements in their countries, like in Ghana, where people with disabilities and relevant CSOs have been calling on the government to take specific steps to ensure the national COVID-19 response is inclusive.

The Ebola epidemic has shown that participatory approaches that engage people with disabilities and their communities throughout all the emergency response phases has helped to protect their wellbeing, and is a powerful and cost-effective way for governments to develop tailored solutions. A good example is the Sierra Leonian Community-led Ebola Action (CLEA) approach, led by the Social Mobilisation Action Consortium (SMAC), which identified collaborative ways to develop local action plans.

In Ghana, Options is working with the UK government and other partners to improve inclusion and wellbeing of people with physical and mental disabilities. As part of this work, we will pilot a tool to help three psychiatric hospitals in the country assess their readiness to provide care and protect their health workers during the outbreak, and work with civil society organisations to deliver psychosocial support to people with disabilities, including mental health disabilities, those who have recovered from COVID-19 and health care workers.

Data present more opportunities. COVID-19 is possibly the most tracked health emergency in history. Every day, a huge amount of open data on the spread of the pandemic is generated and shared by authoritative sources such as the WHO, Johns Hopkins University, the Centre for Disease Control and Prevention (CDC) and national statistical institutes. This evidence is crucial to tailor an effective emergency response and for informing decisions on how to build more resilient and inclusive health systems in the future.

Despite the challenges associated with data use, this data helps governments and their international partners to monitor the spread of the virus, mitigate its effects and identify which communities are most affected. To do this more effectively, governments’ data collection tools must also generate comprehensive and disaggregated data, including on people with different types of disabilities. Options will support the Ghanaian government to rapidly assess any gaps in disability data to ensure that the government’s response is inclusive.

How governments around the world address issues of inclusion and equity in the COVID-19 response will have an impact on containing the virus and on how many lives can be saved.