While turning on the TV or radio to hear about other countries’ COVID-19 experiences is likely to be more of a home rather than work activity, there is also some value in thinking about this professionally. Fortunately, some people have done lots of the heavy lifting for us, by working collaboratively to share their thinking. This blog reports on an international comparison of England and Australian responses to the virus in 2020, but continues to be relevant. Its focus is on people living with disabilities – mainly younger adults.
This is not an article with ‘new’ findings, but a commentary. It is a useful summary of ideas and thinking, backed up by evidence from data sources. While everyone is an individual and talking of people with disabilities is over-generalising, the authors start by summarising what many social care practitioners began to recognise as the pandemic developed. People with disabilities are at higher risk, for reasons such as often needing help with personal care (so in close contact with people and sometimes lots of them), they often live with other people (family or in group settings), and they may have pre-existing conditions that mean contracting the virus is easier. And then, in terms of outcomes, for many possible, and sometimes combined reasons, the outcomes for people with disabilities are often worse than for other people – it is more likely to be fatal. The authors cite government reports from 2020 that suggested the cause of death for over 700 people with disabilities was COVID-19 related, with a much younger peak age of virus-related deaths than the general population. In both Australia and England, the authors provide evidence that governments were slow to recognise this and to respond.
All this needs to be set in the context of healthcare for people with disabilities which shares common features between Australia and England. For a start, there is not enough healthcare workforce capacity, including in primary care. Accessible information is not always available (e.g., British Sign Language interpreters, easy read material). We know there are many discriminatory practices preventing equal access to healthcare, including life-saving treatments. At the other end of the spectrum there are insufficient effective, targeted health promotion efforts, so unsurprisingly low levels of participation in prevention such as breast screening. While lack of coordination across sectors including health, education, and social care and across different levels of government is sadly well known in England, it seems also to be the case in Australia. The grass is not always greener…
At the time of writing of this commentary (end 2020) and of this present blog (September 2021), the scale of the pandemic is worse in England than in Australia, although part of Australia is presently in lockdown. In both countries, disability advocates have tried to capture governments’ attention so that infection among people with disability and support staff can be reduced, priority and vaccination testing can be rolled out, and services tailored to meet people’s needs.
However, the authors point to the lack of a co-ordinated COVID-19 government response in England for people with disability. At high level, they suggest that there should have been a national strategy concerning people with disability, and disability groups should have been better included in policy development. Policy announcements/guidance with substantial implications for people with disability seem to have been released piecemeal, often without accompanying accessible/easy read versions. Voluntary sector groups have had to produce their own (e.g., MENCAP).
Several other charges are laid at the government’s door in England. These include access to, and availability of, health care and questions over hospital discharge of people who were infected. Some social care workers will know of care users for whom some primary care services had issued blanket ‘Do Not Resuscitate (DNRs) notices’ without consultation. They will remember how COVID-19 testing and the provision of Public Protection Equipment (PPE) was for several months focused on hospitals, often only reaching care homes for younger adults and other groups, and other social care staff in June 2020.
In Australia, multiple agencies and government levels also complicated responses with different systems of regulation and different reporting arrangements for the virus. Only in August 2020, did the Victorian and Commonwealth governments develop a Disability Emergency Response Centre. This set out the response to managing outbreaks through infection control, PPE, testing and providing nursing support. As in England, there were efforts to restrict the movement of workers between different settings, and covering the costs of sick leave for ‘casual’ staff.
The authors argue that the pandemic shows that some long-standing problems can be addressed quickly if the motivation is there. They give the Australian example of suddenly being able to find alternative accommodation for people with disabilities who seemed to be set for a hospital admission. They propose that this sense of urgency needs to apply to getting health care plans in place for everyone to include plans for other crises or contingencies. Such plans need to be co-produced but to do this, they advise ‘Upskilling of health professionals is needed through education (including with people with disability) and leadership within the professions. Information and health care facilities must be made accessible as part of routine practice and as a requirement for accreditation of providers. The social care workforce must be recognised as an essential care workforce that prioritises protecting their own health and the health of people with disability’. While no-one likes what gets to be called bureaucracy, they also note the importance of data, which does not arrive without someone in social care or other service putting in effort in collecting that too and then reporting it.
The authors conclude that ‘COVID-19 poured gas on the long-burning issues people with disability face in accessing health care. When the worst of the fire is out these inequities won’t have disappeared’. While English readers have to swap this metaphor from gas to petrol, it is rather apt. For English readers they suggest a need to learn from Australia’s pandemic response – action to improve health is possible – but they do (kindly) acknowledge that there is much to learn from England too – action is necessary.
Strengths and limitations
COVID-19 commentaries and research findings need to be set in the context of when they were written and where. For instance, there have been continued major differences in the developed world between pre- and post-vaccination periods. And, as this article shows, even high-income countries are experiencing the pandemic in different ways and times. And readers too are not on the side-lines – we are all affected and continue to be so.
Implications for practice
The COVID-19 pandemic has shown the importance in social care of integration with health – but not just organisationally. Health plans, information and contingency arrangements can be seen as part of bureaucracy, but they can be produced by and with experts with lived experience and their supporters. And social care needs also to continue to be alert to instances when evidence of discrimination emerges.
Conflicts of interest
No conflict of interest
Anne Kavanagh, Helen Dickinson, Gemma Carey, Gwynnyth Llewellyn, Eric Emerson, George Disney, and Chris Hatton (2021) Improving health care for disabled people in COVID-19 and beyond: Lessons from Australia and England, Disability and Health Journal, Volume 14, Issue 2, 101050, https://www.sciencedirect.com/science/article/abs/pii/S1936657420301886?via%3Dihub