Federal report finds foreseeable, disproportionate COVID-19 fatalities, heavy toll for people with disabilities

Friday, October 29, 2021

progress reports

For Immediate Release

Oct. 29, 2021

WASHINGTON–Today the National Council on Disability (NCD) released a comprehensive report on COVID-19’s impact on people with disabilities, finding over 181,000 people with disabilities in long-term care facilities died from it by March 2021.

The deaths—roughly one-third of all U.S. COVID-19 deaths—were at facilities that house, in addition to seniors with disabilities, people with disabilities age 31 to 64, who comprised up to 14 percent of residents.

2021 Progress Report: The Impact of COVID-19 on People with Disabilities found that due to years of underinvestment in home- and community-based services, 850,000 people with disabilities nationwide are waiting for services to transition out of congregate care settings where disproportionate numbers of people have died during the pandemic.

The report takes a comprehensive look at COVID-19’s disproportionate negative impact on people with disabilities in the United States, examining a year in a public health emergency as it occurred in real time. The report examines the pandemic’s impact across seven areas: healthcare, the direct care workforce, congregate care facilities (CCFs), education, employment, effective communication, and mental health and suicide prevention policy, providing findings and recommendations for policymakers.

In addition to the disproportionate fatalities, key findings of the report include:

People with disabilities faced a high risk of being triaged out of COVID-19 treatment when hospital beds, supplies, and personnel were scarce; were denied the use of their personal ventilator devices after admission to a hospital; and at times, were denied the assistance of critical support persons during hospital stays. Informal and formal Crisis Standards of Care (CSC), pronouncements that guided the provision of scare healthcare resources in surge situations, targeted people with certain disabilities for denial of care.
Students with disabilities were denied necessary educational services and supports during the pandemic and have experienced disruption and regression in their behavioral and educational goals;
The growing shortage of direct care workers in existence prior to the pandemic became worse during the pandemic. Many such workers, who are women of color earning less than a living wage and lacking health benefits, left their positions for fear of contracting and spreading the virus, leaving people with disabilities and their caregivers without aid and some at risk of losing their independence or being institutionalized.
Deaf, Hard of Hearing, Deaf-Blind, and Blind persons faced a profound communication gulf as masks became commonplace, making lipreading impossible and sign language harder.

The report also highlighted the tragic impact that a lack of adequate data has had throughout the pandemic. For decades, federal and state healthcare data collection practices failed to capture baseline information about the functional disability status of patients and the public, leaving people with disabilities uncounted during and after public health emergencies. Throughout this study, NCD found that this absence of data created barriers in collecting real-time accurate information about the impact of COVID-19 on people with disabilities or the healthcare disparities they experienced during the pandemic.

NCD found that the coronavirus exacted a steep toll on certain populations of people with disabilities, and the events that unfolded during the pandemic, including measures to mitigate the spread, posed unique problems and barriers to people with disabilities.

“The Coronavirus pandemic has disproportionately impacted people with disabilities, not because the virus targets disability, but because long-standing shortcomings in numerous systems predictably left us vulnerable,” said NCD Chairman Andrés Gallegos. “The report explains how the pandemic has unmasked profound inequities in nearly every aspect of life; the imperative to be consciously inclusive of disability; and the need for urgent reforms.”

KEY RECOMMENDATIONS: To ensure the United States is prepared for a future pandemic or similar national health crisis, some of NCD’s key recommendations to policymakers include:

Calling for a Patient’s Bill of Rights for People with Disabilities that would encompass effective communication, policy modifications, treatment without discrimination, access to personal support persons, use of personal medical equipment, advance directives, Physician Orders for Life-Sustaining Treatment (POLST), or Do Not Resuscitate (DNR) orders without undue influence, information on and assistance for returning to the community from hospital or institutional care, and treatment decisions free of bias about one’s quality of life and capacity to benefit from treatment due to the presence of a disability;
Calling for a cross-agency strategy to mitigate the risks of infectious disease transmission in CCFs and address the civil rights concerns that impact the lives of people with disabilities in CCFs.
Calling on the CDC to emphasize CCF census reduction as an infection control strategy by expanding its guidance beyond long-term care facilities (LTCFs) to include all CCFs and emphasize that reducing the census of CCFs through accelerating discharges and diversions is a critical strategy.
Calling for Congress to provide funds dedicated to compensatory education for students with disabilities who could not receive necessary services and supports during the pandemic and who have experienced disruption and regression in their behavioral and educational goals.
Calling for joint guidance from the Departments of Education and Justice outlining the elements of accessible remote education for students with disabilities

NCD is an independent federal agency providing recommendations to the President, Congress and federal agencies on disability policy. Read this and all of NCD’s reports at NCD.gov.