Covid-19: challenges for people with intellectual disabilityBMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m1609 (Published 29 April 2020) Cite this as: BMJ 2020;369:m1609
All rapid responses
As this letter notes, COVID-19 presents distinct challenges for people with intellectual disability. However, the pandemic has brought challenges for people with a disability to foreground, including with the social and health systems which people with disability access and are supported by.
As more data has emerged on COVID-19, its disproportionate and inequitable impacts across the population are becoming clearer . While politicians frequently comment that the virus does not discriminate, our underlying social structures and systems mean some groups are more vulnerable and therefore more affected than others. People with disability are particularly at risk, in part because they often have poorer health outcomes because of underlying conditions, have difficulties in accessing health and other services, and typically fare worse once they are in the healthcare system [2,3]. This is compounded by changes to the structure and operation of disability service systems in many countries, which may have created the conditions that facilitate spread of COVID-19 infection among people with disability and the disability workforce.
In the last two decades there has been a rapid expansion in personalisation of disability services . Personalisation emerged putatively as a way to give people with disability more choice and control over the services and supports they receive. In many places, this has transformed systems where governments had a degree of control over the workforce into a type of ‘gig’ economy [5,6]. In personalisation schemes, individuals are paid to provide discrete services: from showering and feeding, to social support activities. This translates to between as many as ten different support staff providing care, then moving onto another ten homes.
Personalisation is primed to spread infection on a number of levels:
• Large numbers of workers are moving between the homes of individuals with disability
• Many do not receive paid leave and so are not paid if they do not perform care tasks, disincentivising people to self-isolate if they have been exposed to COVID-19 or have symptoms
• The workforce is highly disparate, casual and precarious, meaning they themselves are at greater risk of ill-health. This makes them harder to regulate. Responsibility for the provision of preventive measures such as personal protective gear and information is unclear (e.g. the government, a service provider, or in the case of those directly employed by people with disability, the client)4,5.
What can be done?
Information is key in a pandemic situation, particularly regarding best practice in hygiene and risk mitigation regarding transmission. In some countries, such as Australia, we have seen some efforts at information provision, such as a specialised support line for people with disability, their families and other carers. This approach needs to coordinated and cohesive, which it has not been to date .
We have seen a great deal of mobilisation around access to personal protection equipment (PPE) in areas such as health and aged care , but disability workers are the forgotten frontline health workers. In epidemics governments bear a responsibility to provide PPE to all workers who are high risk of contracting and spreading disease. This cannot be left in the hands of providers or individuals who employ their work directly, who may be unable to afford it or source it.
We need to ‘un-gig’ the workforce during a pandemic. This means government guarantees income for support workers who may be sick, have caring responsibilities or have their shifts cancelled and compensate family members that need to take time off work to provide care that is usually provided by paid staff. This would ensure that workers do not spread infection and that workers and families are not financially worse off during the pandemic. Governments also need to mobilise a back-up workforce, as we are seeing around the world in health care, for when workers become ill or who chose not to come to work due to their own health risk.
1. Ahmed F, Ahmed N, Pissarides C, Stiglitz J. Why inequality could spread COVID-19. The Lancet Public Health. 2020 May;5(5):e240.
2. Mithen J, Aitken Z, Ziersch A, Kavanagh AM. Inequalities in social capital and health between people with and without disabilities. Social Science & Medicine. 2015 Feb;126:26–35.
3. Kavanagh A, Devine A, Shields M. The health of people with disabilities. In: Quarriasha A, Baum A, Leyland A, Li L, editors. Oxford Textbook of Global Public Health. Oxford University Press; 2020.
4. Dickinson H. Individualised funding: what works? Evidence Base. 2017;3.
5. Carey G. The National Disability Insurance Scheme and COVID 19: a collision course. Medical Journal of Australia [Internet]. 2020;Prepint. Available from: https://www.mja.com.au/journal/2020/national-disability-insurance-scheme...
6. Needham C, Glasby J. Debates in Personalisation. Bristol, UK: Policy Press; 2014.
7. Dickinson H, Yates S. More than isolated. CYPDA; 2020.
8. The Lancet. COVID-19: protecting health-care workers. The Lancet. 2020 Mar;395(10228):922.
Competing interests: No competing interests
It is well recognised that pneumonia is the key manifestation of coronavirus disease 2019 (COVID-19), even though evidence of the viral effects on other organs are beginning to emerge. Considerable concerns have been raised regarding the impact and challenges on certain vulnerable groups including those with intellectual and mental disability (1) and physical disabilities (e.g stroke patients).
It is interesting to highlight that the brain and nervous systems can also be damaged directly or indirectly by COVID-19 causing varying degree of physical and mental deficits. While many of the earlier studies that emerged from Wuhan city documented impaired consciousness and encephalopathy in those severe COVID-19 cases requiring intensive care (2), and some succumbing to the overwhelming sepsis, a few neurological complications are beginning to attract attention due to their potential impact on long term care when the patients eventually recover from the infection.
Cerebrovascular diseases (CVD) in COVID patients have been reported in the United Kingdom (UK) (2) and USA (3,4) and in 6 out of 214 patients in a Chinese centre (5). Interestingly, most of these involved male subjects and several were younger than 50 years old. The stroke subtypes were mixed (small and large vessel, ischemic and haemorrhagic) and a number had other comorbidities like hypertension and diabetes, and clinical outcome has been varied, from recovery to severe disability and death. There was a striking finding in the UK series where 5 of 6 patients had a positive lupus anticoagulant, suggesting that coagulation activation and thrombin generation due to proinflammatory cytokines may be a predisposing factor (2) and this certainly warrant further investigations and research.
Another interesting neurological complication is the association of COVID-19 with Guillain-Barre syndrome (GBS). In this disorder, the immune system attacks the peripheral nerves and patients usually present with weakness and tingling in the lower extremities. Several COVID patients have been reported to have GBS (6) with variable clinical outcome, depending on the extent of the pneumonia and other complications. Like in CVD, the extensive peripheral nerve involvement again suggests a likelihood that this results from a possible excessive proinflammatory cytokine response, which can be unpredictable in its course and its response to immunotherapy and hence can be challenging to treat and may lead to chronic disabling symptoms for the affected patients. Brain inflammation/infection (encephalitis) from COVID-19 is still very rare though the presence of olfactory and gustatory symptoms has attracted considerable interest because anosmia may be an early warning sign.
While subjects with existing brain disorders are hugely vulnerable to the physical and mental challenges during the COVID-19 pandemic, it is important to recognise that COVID-19 can create not only acute neurological damage but at the same time lead to long term sequelae of chronic disability that will burden both the carers and society. At this moment, it does appear that proinflammatory central and peripheral nervous damage from COVID-19 poses a significant challenge for patients and optimal management will require development of targeted therapies to specifically address these issues.
Xiao Deng, MBBS
Yew-Long Lo, MBBS, FRCP(UK)
Eng-King Tan, MBBS, FRCP (UK)
1. Ken Courtenay. Covid-19: challenges for people with intellectual disability.BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m1609.
2. Beyrouti R, Adams ME, Benjamin L, et al. Characteristics of ischaemic stroke associated with COVID-19. J Neurol Neurosurg Psychiatry 2020.
3. Oxley TJ, Mocco J, Majidi S, et al. Large-Vessel Stroke as a Presenting Feature of Covid-19 in the Young. N Engl J Med 2020.
4. Al Saiegh F, Ghosh R, Leibold A, et al. Status of SARS-CoV-2 in cerebrospinal fluid of patients with COVID-19 and stroke. J Neurol Neurosurg Psychiatry 2020.
5. Mao L, Jin H, Wang M, et al. Neurologic Manifestations of Hospitalized Patients With Coronavirus Disease 2019 in Wuhan, China. JAMA Neurol 2020.
6. Toscano G, Palmerini F, Ravaglia S, et al. Guillain-Barre Syndrome Associated with SARS-CoV-2. N Engl J Med 2020.
Competing interests: No competing interests