The significance of research to practice during the COVID-19 pandemic

The COVID-19 pandemic has brought unprecedented and swift changes to all of our lives. Threats posed to health and wellbeing are magnified for people with intellectual disabilities, due to both individual and social structural factors. As the position statement from the Department of Developmental Disability Neuropsychiatry, University of New South Wales, Council for Intellectual Disability, Inclusion Australia, and the Australian Association of Developmental Disability Medicine (University of New South Wales, 2020), summed up:

People with intellectual or developmental disability are particularly vulnerable to adverse outcomes associated with COVID-19. Many individuals are within a high-risk category because of poor health status, low levels of health literacy, reliance on third parties to support access to care, and health and disability sectors that are not yet adequately equipped to meet their health needs. These groups, as people living with disability, are at further risk of prejudice and attitudinal biases that devalue their lives and deprioritise their access to preventative, screening and treatment measures for COVID-19.

This statement encapsulates the significance of research about the complex health needs of people with intellectual disabilities and the low capability of health systems to accommodate such needs. Just as importantly, it captures the significance of collaborations between researchers, practitioners, families, and advocates, which enable instant access to evidence. Such collaborations help to compensate for the relative difficulties, when compared to others with disabilities, that people with intellectual disabilities experience in speaking out about their own needs. The position statement, circulated on 22 March 2020, was a loud and urgent call for government action to prevent people with intellectual disabilities being disadvantaged during the pandemic. It was quickly endorsed by 1,500 individuals and organisations across the sector. It provided a differentiated intellectual disability lens that complemented calls to action by the United Nations (Devandas, 2020), the Centre for Research Excellence in Disability and Health (2020), the Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disabilities (2020), and peak disability advocacy groups (People with Disability Australia, 2020). These statements of concern were instrumental in the Federal Government’s establishment of an advisory group and the formulation of the Management and Operational Plan for COVID-19 for People with Disability. The plan was approved by National Cabinet on 16 April (Commonwealth of Australia, 2020a). It was the first national recognition of the higher risks for people with disabilities, and the challenges faced by the disability service sector in maintaining continuity of services and safeguarding both the workforce and the people they support. The plan echoed similar sentiments to those articulated more than a month earlier in respect of the aged care sector (Commonwealth of Australia, 2020b). However, it must be said that the National Disability Insurance Agency has been making adjustments – since the early days of the pandemic – such as advancing payments to providers and extending plan time frames (National Disability Insurance Scheme, 2020). At around the same time the Department of Families and Social Services allocated additional funds for supported employment services (Rushton et al., 2020), and state government health and human service departments issued guidance to providers, such as the COVID-19 Plan for the Disability Services Sector (Victorian Department of Health and Human Services, 2020).

Although the crisis is far from over, a focused national response, such as funding for a dedicated information and help line, access to personal protective equipment for disability support workers, and raising the awareness of health services to the communication and access needs of people with intellectual disabilities, may have helped to avoid some of the catastrophic situations that have developed overseas. Three decades of deinstitutionalisation and policies that promote social inclusion have also mitigated some of the risks for people with intellectual disabilities. It is not by luck but rather by good policy that Australia has very few large congregate disability services, such as Participation House in Ontario, Canada, where, as of 28 April 2020, 40 of the 42 residents with physical or intellectual disabilities, and 38 of the staff have been infected with the virus, and six residents have died (National Post, 2020).

However, it is clear that good policies alone are not sufficient; they must be implemented, and just like good research and theory, they must be continually translated into everyday practice. This relies not only on governments but frontline support workers, organisational leaders, advocates, and families. Stories from the international press have fueled fears about discriminatory practices in health systems, such as the proposal in the United Kingdom to ration care by using a clinical frailty scale that was inappropriate and should never be used for people with intellectual disabilities (Mencap, 2020). Or the story in the United States, which outlines how suggestions have been raised about according lesser value to the lives of people with intellectual disabilities when making decisions about access to treatment (Silverman, 2020). Such fears suggest that human rights for people with disabilities are fragile and not yet deeply embedded in service systems or practice. It is too easy, in times of crisis, to slip back into paternalism and denial of rights. For example, the Chief Executive Officer of a disability organisation identified a flaw in the first version of the COVID-19 Plan for the Disability Services Sector in Victoria that outlined a different, and disadvantageous, interpretation of the State’s social distancing restrictions for people with disability. Unlike the rules that applied to everyone else, which allowed people to leave their home for work that could not be done at home or remotely, disability services were required to ensure their clients remained at home and ceased work that could not be done in the home. As the Chief Executive Officer explained, this interpretation meant that while he was allowed to leave home to go to work, a man with an intellectual disability, who relied on support from a disability service for his one day a week job washing cars, was not allowed to go to work. This man was set to lose not only pay but also the benefits of social contact, albeit at a physical distance, at a time when it was likely to be particularly important to his wellbeing. Several weeks later this discriminatory interpretation was changed through the collective advocacy of this Chief Executive Officer and colleagues in government and non-government sectors. At times of crisis, people with intellectual disabilities are heavily reliant on others to uphold their rights. Vigilance about the quality of support, discrimination, and praxis (the continual process of enacting theory or practising ideas), all become more important than ever. This is the responsibility of all of us in the intellectual disability community, whatever our roles, and it will be made easier through collaborations that enable us to pool resources and share expertise.

At the end of May 2020, results from some early studies of the impact of COVID-19 tend to support early fears about the inequitable impact of COVID-19 on people with disabilities and their families. They also point to the failure of early government responses to adjust information and strategic responses to accommodate the circumstance of people with disabilities their families and service providers. For example, respondents to a survey conducted in mid-March 2020 of 697 family members of children and young people living at home who were NDIS participants and enrolled in schools, identified a broad range of impact, including:

the inability to access essential products and services and the cancellation of supports and educational programs, all of which generated additional caring responsibilities.… feeling scared, uncertain about the best ways to act, and that this was having an impact on the mental health of all family members (Dickinson & Yates, 2020, p. 2).

That one in three respondents in this study had experienced cancellation of support workers (either by self or service) and NDIS services gives some indication of the enormity of the impact of the pandemic on families of people with disabilities, which has been so little recognised in the media and by governments.

A survey about NDIS participants’ access to personal protective equipment conducted by the Summer Foundation in April 2020, found many of the 351 respondents had experienced difficulties accessing personal protective equipment, almost 20% were unsure how to use it, and 48% were concerned about the cost of this type of equipment (Winkler et al., 2020). A large-scale national survey of 2,341disability workers, in progress when the pandemic was declared in March 2020, has significant findings about the lack of regular or indeed any supervision for many disability support workers and casualisation of the workforce since the introduction of the NDIS, which adversely affect the quality of support. In relation to their early experiences of COVID-19, the survey found disability workers were concerned about:

a lack of personal protective equipment being supplied to staff and clients in the initial stages of the pandemic, and that many workers felt their organisation’s safety protocols were inadequate…. the disability sector was being overlooked in the national pandemic response, and were grappling with additional workloads which made it difficult to respond to increased health and safety needs (Cortis & Van Torm, 2020. p. 9).

An international study, funded by the Irish Health Research Board, will help to sharpen understanding about the specific experiences of people with intellectual disabilities, their families and service providers during the COVID-19 pandemic (https://www.ucd.ie/research/covid19response/news/hrbchristinelinehan/. The study involves academic researchers from Ireland, United Kingdom, Australia, United States of America, Netherland, Zambia, Czech Republic, Sweden, Norway, and India and will involve an online survey of family members and service providers (translated into relevant languages). It will seek information about the health experiences of individuals, and of social distancing and other restrictions imposed during the pandemic, as well as access to health and disability services. It will provide important data about experiences of people with intellectual disabilities in Australia as well as comparative data from more than 10 countries. This is a rapid but rigorous study, and the protocol and results will be available on the open access platform of the Irish Health Research Board (https://hrbopenresearch.org).

These studies about people with disabilities in general, and people with intellectual disabilities specifically, will provide important indicators of the additional negative impact on them and compromises to their rights at times of crises, and inform proactive policies to redress and avoid both into the future.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Christine Bigby
Editor, Living with Disability Research Centre, La Trobe University, Melbourne, Australia
[email protected]