Editor’s Note: Richard E. Besser, a physician, is president and chief executive of the Robert Wood Johnson Foundation in Princeton, NJ. He is also co-chair of the Presidents’ Council on Disability Inclusion in Philanthropy. Rebecca Cokley is director of the Disability Justice Initiative at the Center for American Progress in Washington, D.C. She formerly served as executive director of the National Council on Disability. The views expressed here are theirs. Read more opinion on CNN.
The Covid-19 pandemic continues to unearth some uncomfortable truths about our nation, as the inequities that too often live below the surface are bubbling up for all to see.
One such failure that must be more widely addressed and immediately rectified is the neglect of people with disabilities, many of whom are among the most endangered by Covid-19, as their conditions or chronic illnesses may leave them at greater physical risk of suffering the virus’s devastating effects.
This oversight is undermining the effort to “flatten the curve” and leaving many of the 1 in 4 US adults with disabilities to fend for themselves. Gaps in paid family leave policies, home- and community-based services and prescription drug supports stand to strain millions of families and endanger the health of their loved ones and those in their communities. Today and in the months ahead, the disability community must be heard and engaged in any response and recovery actions to help mitigate the crisis.
The diverse community of Americans with disabilities has been ignored in the legislative efforts to date to address the pandemic, including the $2 trillion stimulus package signed into law last month and thus far it seems that pattern is continuing with the subsequent package currently under negotiation. Lawmakers have a chance to get this right in the next round of legislative proposals that will soon begin to take shape in Congress.
Our nation has a sad history of diminishing people with disabilities – whether by warehousing them in institutions or in the most egregious cases, outright eugenics. In moments of crisis, the “othering” of people with disabilities surfaces especially in discussions about the rationing of care – something that will take on greater urgency as more people are likely to become disabled as a result of this pandemic. We’ve seen this as recently as last year’s California wildfires, when utilities shut off power to millions without any considerations or contingencies for people with disabilities whose lives were upended and endangered by unplanned outages.
Dr. Besser also witnessed this as head of emergency response at the Centers for Disease Control and Prevention. His first day on the job happened to be the day Hurricane Katrina swamped New Orleans in August 2005. One of the painful lessons of Katrina was that people with disabilities – notably in nursing homes – needed better planning and protocols for such an evacuation. Scores died because of those oversights. Tragically, we’re already seeing similar systemic failures playing out in New York’s disability community.
When Dr. Besser was acting director of CDC during the H1N1 pandemic in 2009, rarely did he hear a discussion about the needs of people with disabilities. More than a decade later, not much has changed: this community is still an afterthought. For instance, when schools close and tens of millions of students transition to distance learning, children with disabilities are going to be even further behind because they aren’t part of the conversation or equation. Our neglect starts early.
Having worked in the community for most of her life, Rebecca Cokley finds it important to remind folks that while school is where it starts people with disabilities then grow up to have less access to housing, much higher rates of poverty, lower levels of education and higher barriers to employment – even when we aren’t in the midst of a global crisis. It’s a testament to the resiliency of these individuals, in fact, that they can contribute so profoundly to our greater good and to the communities in which they live in spite of the failures and neglect of public policy that have marginalized and excluded so many people with disabilities for generations.
This is not the nation we aspire to be. It’s time, now, to address some of the challenges that people with disabilities will be facing as we enter the most perilous period of this pandemic. The broader disability community, including the Disability Justice Initiative at the Center for American Progress, are working to address these for the short and long term:
First, Congress must provide assistance to the workforce that delivers direct care to people with disabilities, whether in their homes or in community facilities. This essential workforce, both paid and unpaid, helps people with day-to-day living and is at the front lines of keeping millions of people out of hospitals or other institutions where Covid-19 thrives. The shortage of personal protective equipment for these workers, as with other health care providers, must be addressed to protect the workers, the people with disabilities and the community-at-large.
Second, paid family and medical leave proposals have never been more relevant. Many families of people with disabilities have lost their personal care attendants because of social distancing mandates and an overwhelmed health care system. Legislation is needed to provide access to paid family leave for those who must take leave to care for an adult family member with a disability, or those who might need to take leave in order to self-isolate. Any family leave proposal that moves forward would be incomplete without addressing this gap.
Third, Congress needs to tackle the challenges people are facing in getting prescription drugs and medical supplies during these times of isolation. Insurance plans vary greatly as to the allowances around mail-order prescriptions, and many pharmacies have closed; while drug shortages have become commonplace. People with disabilities, often less mobile and more reliant on medicine, will be disproportionately impacted by the growing strains on the health care system.
Addressing these glaring needs will be the first step on a long journey toward seeing people with disabilities as equals. We as a nation are setting ourselves up for failure in both the short and long term by neglecting these 60 million-plus Americans – our family members, neighbors and co-workers – in their greatest moment of need.
A nation should be judged by the way it treats its citizens who are most in need – every day, but especially at times like this when we all feel vulnerable. We must focus our creativity and compassion on the needs of all by specifically addressing those who will be hit hardest – whether the homeless, people of color, immigrants, and those who are incarcerated (all groups in which people with disabilities are disproportionately represented as well).
This is not a moment for nodding sympathy or condescension toward people in need. It is a time to recognize our own personal and policy oversights and failures that only become apparent during crises like the Covid-19 epidemic. It is a time to embrace systemic changes that make health equity a tangible goal.
We can’t right the wrongs of history, but we can lay the foundation for a more equitable future and model the type of partnerships critical to guiding us all through this tough time.