Author’s Note: The disability community is rapidly evolving to using identity-first language in place of person-first language. This is because it views disability as being a core component of identity, much like race and gender. Some members of the community, such as people with intellectual and developmental disabilities, prefer person-first language. In this column, the terms are used interchangeably.
As the days of sheltering at home due to the coronavirus continue, some are questioning if stay-at-home orders are still necessary. Meanwhile, during the first two weeks of April 2020, more than 3,000 deaths from COVID-19 have been reported in nursing homes and long-term living facilities across the United States.
Many have tried to quell fear brought on by the coronavirus with ableist reminders that older individuals and those with underlying health conditions are the most at risk for complications from COVID-19. However, this is not a cause for comfort: Those at highest risk represent a large number of Americans and should not be discounted. Their fates are intertwined with both the personal and economic future of communities across the United States.
Older Americans and those with preexisting health conditions are not only worthy of protection and care in their own right, but their heightened risk to the most severe effects of COVID-19 is due in part to a failure of U.S. systems to provide necessary supports. This lack of compassion played out in real time when Texas Lt. Gov. Dan Patrick (R) suggested that older Americans should be willing to risk death from COVID-19 for the sake of the economy. It was particularly callous considering a single nursing home in Kirkland, Washington, was the epicenter of one of the earliest outbreaks of coronavirus deaths in the United States.
The danger posed by viral diseases such as COVID-19 will only increase in the coming years. In about a decade, the Baby Boomer generation will be entirely over the age of 65, marking a significant shift in the demographic makeup of the country. The failings and difficulties surrounding the response to the coronavirus pandemic highlights how necessary it is for those in government and public health to begin thinking about these demographic trends when planning for future outbreaks.
Currently, more than 50 million people in the United States are over the age of 65, and it is estimated that by 2034 there will be more people over that age than under the age of 18. Furthermore, longer life expectancy suggests that by 2050 more than 18 million people over the age of 85 will live in the United States. The current shift in treating social supports—such as free access to emergency testing and expansion of health coverage—with urgency, as seen in the recently passed Families First Corona Virus Response Act, cannot end with the current crisis. States and the federal government will need to continue to fervently address where past policies or lack of investment have made populations more vulnerable and plan for how to mitigate crises such as the coronavirus pandemic in the future.
Not only are older people a large and growing part of the global population, but they are also essential to our economic success. In the U.S. workforce currently, the 55 and older population accounts for more than 23 percent of workers, with more than 10 million people older than age 65 actively working or looking for work. This latter figure is estimated to grow to 13 million people by 2024. State, local, and federal policymakers have proposed and implemented changes to paid family and medical leave. These changes will be necessary to address our current crisis and must be the first of many steps toward creating resilience to both human-made and natural crises in the face of these demographic population shifts.
Additionally, estimates suggest that there are between 14.7 million and 23.5 million people of all ages, familial makeup, and working status in the United States who are living with compromised immune systems. As of 2016, 61 million people in the United States—1 in 4—have some sort of disability, up from 1 in 5 in 2010. The number of people with disabilities in the United States will increase as life expectancy and medical interventions improve. Additionally, up to half of nonelderly people in the United States have a preexisting condition. The United States is home to millions of people who are older, disabled, or have underlying conditions that could put them at higher risk for fatal outcomes from pandemic diseases and other crisis events.
Meanwhile, home health aides for people with disabilities and older adults were already in short supply before the coronavirus pandemic. A 2018 study found that the United States will need to hire roughly 2.3 million health workers by 2025 to cover increased need, with nearly a half million of those positions being home health aides. These workers are often essential to their clients’ safety, yet they are underpaid and lack necessary resources such as personal protective equipment, without which they put themselves and their clients at risk.
Often, these populations are not only vulnerable because of their age or health status but also as a byproduct of failing response infrastructure and lack of preparation. The COVID-19 crisis highlights this, as have disaster events in the past—such as the California Camp Fire, Hurricane Katrina, and Superstorm Sandy. In Hurricane Katrina and Superstorm Sandy in particular, death rates for older people ranged from almost 50 percent to more than 70 percent of all fatalities. Research shows that older and disabled people are 2 to 4 times more likely to die or be seriously injured in a disaster—often because of failed U.S. response efforts.
According to an Imperial College study that influenced the United States and other governments’ coronavirus response measures, risk of death is increased in part due to the failure of the national health care systems to provide enough medical care and equipment—particularly ventilators—to those who contract COVID-19. Recently, Dr. Eric Toner, a researcher at Johns Hopkins Center for Health Security, warned that the United States’ lack of sufficient ventilators in hospitals to treat COVID-19 could lead to “tough decisions [that] would have to be made about who gets access to a ventilator and who does not.”
With a medical system that has a past rife with racist and eugenicist practices that often resulted in the medical mistreatment and death of marginalized populations, the federal government must support states in accessing necessary funding, equipment, and resources to avoid forcing health care professionals to make choices about who will and will not receive treatment due to lack of resources. A legal complaint has already been filed on behalf of people with disabilities regarding Washington state’s recently released plan for resource rationing, citing potential discrimination against people with “loss of reserves in energy, physical ability, cognition and general health” by suggesting outpatient or palliative treatment for these individuals when there is not adequate care. This should sound the alarm to legislators that the changes being suggested and implemented around health care access and supply production cannot be temporary stopgaps to how we plan for future outbreaks.
In particular, early studies suggest that those who recover from COVID-19 have reduced lung capacity, which could mean the need for medical treatment and support will last even after the virus is contained and individuals have recovered. Legislators must commit to upholding the importance of every life by challenging discriminatory emergency-rationing practices and increasing access to treatment and production of necessary consumable and durable medical equipment.
Shortages in housing and social safety nets also exacerbate death and sickness rates as well as disrupt necessary care for those at greater risk. The lack of affordable housing and the age gap for benefits means that people ages 51 and older make up one-third of the unhoused population—a population for whom it is nearly impossible to self-quarantine.
These numbers do not account for the economic downturn that COVID-19 will likely cause, which will potentially affect individuals’ ability to retire or to continue to pay bills that keep them in their homes. This is at a time when the United States has already witnessed the growth of the age 50 and older homeless population by more than 10 percentage points in the past decade. With about 10,000 people in the United States turning 65 every day, expanded unemployment insurance and economic support for individuals need to become long-term practices in post-COVID-19 America.
As the older and disabled populations increase, the problems facing these communities today that put them at higher risk will only grow. The next pandemic or public health crisis will take a greater toll if the United States does not address these shortcomings now, as these types of systemic and infrastructure changes do not happen overnight. Congress must look toward permanent policy changes that focus on establishing, funding, or expanding affordable accessible housing; providing residents with access to testing, treatment, and community-based care; and establishing worker protections such as paid family and medical leave for times of sickness or crisis. People with disabilities and older individuals cannot be viewed as an acceptable sacrifice or a group to be warehoused in institutional settings to avoid dealing with the reality that government programs are part of the United States’ preparedness problem.
Legislators cannot look at emergency measures that only consider the short term. The makeup of the U.S. population is changing. The effect of COVID-19 on legislative priorities regarding public health and safety must be a step toward better preparing for a volatile global existence that disproportionately affects large swathes of Americans and touches the entire U.S. population.
Valerie Novack is a nonresident senior fellow for the Disability Justice Initiative at the Center for American Progress.