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Disabling Corona!

By Dr Shubha Nagesh
on March 19, 2020

2020 and the world has gone viral (pun intended)! Some are comparing the current situation to the 1918 flu epidemic that took more than 30 million lives. Only time will tell.

With COVID-19 now becoming a pandemic, it seems we are all at risk, however there is one group of people who will face greater challenges and consequences, these are people with disabilities, among others. Yet it is business as usual in our city. The streets are full, and people believe these days off are for shopping, hanging out and making merry. Although cinemas and malls have closed, public gatherings have been banned and there are advisories to stay home, maintain distances and self-isolate, people are still going around uninhibited, and possibly transmitting the virus.

In the meantime, India is being lauded for its proactive stance (health communication strategy that converted most ring tones to health advisories, border enforcements, etc), however we have so much more to do in terms of expansion of testing potential, involvement of the appropriate experts, dissemination of factual information, etc. In Dehradun (capital of the Indian state Uttarakhand), our first case was reported two days ago, and while the government has responded by taking over 10% of beds and ventilators in major hospitals and setting up a testing centre, we still have a long way to go. This is particular true when one considers that the deluge is yet to arrive, and we are not aware of its magnitude.

For me, however, it all started on February 3 when media channels shared stories of Yan Cheng, a 16 with Cerebral Palsy who lived with his family in Hubei province, the epicentre of the coronavirus outbreak. He died after his father and brother were placed in quarantine, having allegedly been fed only twice in the week that he was separated from them.

Articles have come out over the last few days from parents, activists and organisations who work for persons with disabilities, and a few among them have had a profound effect on me.

David Perry, whose warm and practical take on what the outbreak means for his son and for all of them as a family, highlighted the importance of food routines for his son, saying, “To us, parenting an autistic child means doing everything possible to learn how he experiences the world, then encouraging his autonomy and agency, even when it means listening to the same music repeatedly, and making sure that he’s surrounded by routine and predictability, with all change telegraphed and practiced. Besides, you can’t literally make your kid eat.”

John Pring spoke about how disabled people cannot be seen as inevitable cannon fodder, and pointed out that while the Department of Health and Social Care reiterated hand hygiene, travel advice and planning, they did not mention social care.

Andrew Pulrang spoke of how “it can be harder for disabled people to take prudent steps to protect themselves from the coronavirus outbreak”.

People with disabilities all over the world are reporting anxieties over the potential impact of the coronavirus to themselves, particularly among those with high support needs and those who depend on care givers for most of their needs.  This epidemic will have a huge impact on them because:

  • Pre-existing inequities always get amplified in epidemics and emergencies.
  • Protecting those with most vulnerabilities should be priority, but somehow almost always gets forgotten.
  • Persons with disabilities may have significant challenges with self-isolation and quarantine.
  • Inclusive systems particularly in the Global South may not be very efficient, and they can be further weakened in times of crisis.
  • New systems for Inclusion cannot be established in the short-term, particularly in resource-constrained settings

Public Health planning for the COVID-19 pandemic must involve people with disabilities to anticipate in advance and address their needs to minimise risk exposure and ensure continuity of essential services, without which their quality of life can be compromised, significantly. So, what can countries do to support persons with disabilities in epidemic situations, recognizing that most or at least some of the strategies will be difficult for them to adhere to and comply with?

First of all, they must ensure the continuation of vital services (to the best possible extent). It is vital that governments recognize that access to these services is vital, and they are prepared to set up alternative support systems, in case the carers fall sick themselves. Neighbours and volunteers could be asked to donate their time and resources for this, for instance. Secondly, test centres, treatment facilities and other health facilities must be made accessible, since people with disabilities may need routine health care in addition to care for the infectious disease. Preventing or interrupting services may be just as detrimental to people with disabilities as the infection itself.

Persons with disabilities require the same information, services, resources and facilities as others. All communication about the outbreak must therefore be made accessible and persons with disabilities must be part of the plans and strategies that are developed and implemented.

Self-isolation and quarantine, particularly for those who need full time support will be the great challenge – in fact, for many, this will be impossible, as without caregivers and social support systems, some persons with disabilities may not be able to care for themselves. In such cases, the support has to be innovative, for instance staying in touch through email, internet and video-conferencing could help to maintain the connection. People with cognitive impairments should be sensitized with care, in a manner they can understand and using clear, crisp and relevant measures, guidelines and adapted tools such as sign language in news updates.

People in residential care and homes also require particular consideration, since their risk of developing infections is relatively high and escalates in outbreaks. For this population, maintaining a good stock of essential medicines, e-consultations, continued support with infection control, extra support staff, optimizing of existing resources etc. are steps that should be prioritized. Infection control measures for those who provide care and support should be considered urgent, and prophylactic measures should also be put in place. Care givers and their families should also be supported with correct advice, risk aversion protocols and continued tele sessions with persons they care for.

Independence and autonomy may also be affected, and this has to be dealt with effectively with smartly managed support systems. There is an ongoing debate whether isolation or institutional care will be more tough on people with disabilities – it really depends on the person, individual challenges and context.

For children with disabilities, it is crucial to train parents who quite understandably are on edge, to step up infection control measures and maintain diet and other routines where possible. Anxiety among parents and families has to be alleviated with sensitivity, as they deal with and prepare for the possibility of being separated from their vulnerable family member either to self-isolate or for quarantine.

Civil society, private players and many other stakeholders can come together to support local governments with setting up and maintaining support systems  to protect persons with disabilities from the COVID-19 threat. But more than any of the above, there is an urgent need to give right advice and reduce the mental stress around the virus, its spread and containment, particularly among those with challenges and vulnerabilities. A deliberate focus on ensuring that facts rather than rumours are shared on all media platforms, particularly social media could help.

As someone who works with children with disabilities, our organisation first of all shared important information with staff about the virus, models of spread, symptoms, strategies for containment, and all in the local language. We also ordered sanitisers for all centres and supplemented them with hand hygiene pictures for all to understand. We then talked to the children to help them understand the current situation. Crucially, we have ensured that correct advice from reliable and authentic sources was shared and myths and rumours were dispelled at periodic intervals. We finally closed our centre, first for the children, and then for the staff. But before this, we ensured key staff were given correct factual information and a plan was created to ensure that solidarity would be extended to staff and/or their family members who would be affected.

The Virus is here to stay, and we need a plan.

A plan that works for everyone and Leaves No One Behind.

If not now, when?

Credit: Manik Mandal (Copyright- Latika Roy Memorial Foundation )

About Dr Shubha Nagesh

Medical doctor by training and further specialized in Global Health from Karolinska Institutet as an Erasmus Mundus Scholar. An Atlantic Fellow for Global Health Equity, she works for children with developmental disabilities in the foothills of the Indian Himalayas, and is striving to make childhood disability a global health story. South-Asia correspondent for IHP.
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