Beth Shalom is a Jewish nursing home in Amsterdam Zuid. The building has a light, airy and open feeling. Residents’ rooms are set along an atrium with green trees, plants and brightly coloured chairs.
But for the past few months, fewer people have been enjoying these amenities. Despite going into lockdown as soon as the RIVM gave the word in March, the nursing home lost 26 residents in just one month, one-fourth of the total residents. Others have died since. Almost half of the staff were infected as well.
The story of the high death rate at Beth Shalom gained publicity, not just in Amsterdam but internationally. But not only was there a disparity between the impact of Covid-19 on people living in congregate care versus those receiving support in their own homes, there was also a huge disparity regarding the impact of Covid between clean, well-funded care homes like Beth Shalom and care homes already struggling with staffing, hygiene and service to low-income clients. At the understaffed and poorly cleaned Home Farm care home on the Scottish island of Skye, 85% of the residents came down with Covid. One by one, about half of those affected died. Its poorly paid staff were also badly hit. In New York, disabled adults living in group homes remain among one of the populations worst affected by the virus. In every country, disabled people are the poorest of the poor, and even in the world’s wealthiest countries congregate care for disabled adults is generally even less well-funded than that for the elderly.
Those with the greatest needs were paradoxically the last group to be thought about.
Profits and priorities
Surprisingly, however, many of the worst affected facilities turned out to be owned by huge and very profitable businesses. The ultimate owner of Home Farm, for example, was a private equity firm based in the Cayman Islands that has paid out millions in dividends to its owners for the last few years. As relatives dug to find out why PPE had not been purchased, why cleaning staff was insufficient, why their loved ones did not receive high quality care despite thousands being paid out by families or local authorities on their behalf, the answer often emerged that corners were cut to create the profits required by owners.
It would be easy to blame the profit motive alone—and clearly it is part of the problem. But many aspects of health and care provision have been turned into profit-making opportunities over the past 40 years, while only some parts of the sector saw massive negative impacts. It seems clear that other factors were at work as well. This is where transdisciplinary research is invaluable.
Connecting the dots via interdisciplinary research
To fully understand the impact of Covid-19 on disabled and elderly people, we would need a team of researchers coming from different disciplinary backgrounds that give them the expertise required to understand the complex structures involved in the financialisation of care (not to mention intersecting services like health, education, youth services and criminal justice), the political environments that have permitted or even encouraged financialisation, the labour conditions that result in care work being low-paid and low-status despite its now even more obvious importance, the ways in which working conditions contributed to the virus’s spread, the background of political decisions made that increased risk to the most vulnerable, the value equations that all too often cause disabled and elderly adults to be moved into congregate care instead of receiving support to live independently in the community for as long as possible (even when congregate care sometimes turns out to be more costly, not less), the disparities in basic health care that caused increased vulnerability to Covid-19 infection, and the stigma attached to disability and older age that permitted many to look the other way as the storm clouds gathered. The differing societal reactions between countries—for the most part, relative indifference in the Netherlands, whereas in the UK, US and Italy families and many others have expressed outrage and sought justice—also need attention, and understanding these differences is as complex as their causes.
"It’s these never ending battles for equality that breaks us parents, far, far more than the challenges caused by our child’s disabilities."
Negative impacts across the lifespan
The same can be said about the very many other disparities that the Covid-19 epidemic has opened up to public scrutiny, whether these concern ‘race,’ gender, socioeconomic status or my own area of specialism, disability. These adverse differential impacts can be observed across the lifespan of devalued individuals. In the UK, for example, many parents of children and adults with disabilities have been forced to give up work to provide full-time care during the pandemic as schools, childcare centres and day centres closed their doors. And whether it was planning for online education, planning the return to classroom-based education, or ensuring that basic healthcare needs were met, it seems that those with the greatest needs were paradoxically the last group to be thought about.
One of my former students, Emma Murphy, has a school-aged son with multiple disabilities. During the pandemic, she first had to fight to ensure the medical support Hugh receives at school could be delivered at home while she home educated, then to try to make sure he can safely return to the classroom when the UK government ordered it. Conflicting messages, lack of coordination between health and education, uncertain and woefully underfunded services, and lack of planning for related issues like transport, all collided to bring home the clear message that disabled children are low on the societal priority list. She wrote: “I’ve said it many times, but it’s these never ending battles for equality, these fights to ensure our child’s basic human rights are met, the constant shouting to get our voices heard, that breaks us parents, far, far more than the challenges caused by our child’s disabilities.”
Problems like those that Emma and Hugh currently face—he has still not returned to school, nor can she return to work—are complex and systemic. The fight faced by disabled people and others devalued by society isn’t just a Covid-19 issue: the pandemic makes the scope of unmet need more obvious. When suddenly disabled people and their families realise that thousands of them have been affected in the same way, at the same time, it sweeps away the usual societal message that their adverse situations are individual problems that they must fix alone. Researchers can provide the backing needed to address these inequalities, but to contribute to solving a problem as complex as parenting, educating and protecting the health of medically fragile children and adults during a pandemic, it requires a team of all talents.
Written by Dr. Mitzi Waltz, researcher/docent Global Public Health at the Athena Institute