October 29, 2021
FULL REPORT (PDF)
FULL REPORT (DOC)
SCOPE AND PURPOSE: This report examines COVID-19’s disproportionate negative impact on people with disabilities in (1) accessing healthcare; (2) accessing direct care support; (3) congregate care settings and transition; (4) education; (5) employment; (6) effective communication; (7) mental health and suicide prevention services; and summarizes the federal and state response to these impacts. The purpose of the report is to document the difference that disability made to one’s experiences and outcomes in the United States during 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 data dearth created barriers in collecting real-time accurate data about the impact of COVID-19 on people with disabilities or the healthcare disparities they experienced during the pandemic. This study makes recommendations to policy makers on ways to improve data collection on people with disabilities and their experiences that will allow for a nuanced look at how disability creates a unique difference to health disparities.
KEY FINDINGS: NCD found that COVID-19 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 in each of the report’s seven areas of focus. Key findings include:
- People with intellectual or developmental disabilities, and medically fragile and technology dependent individuals, 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.
- Limited opportunities to transition out of congregate settings to community-based settings, to mitigate the risk of contracting the virus, revealed continuing weaknesses and lack of sufficient Medicaid Home and Community-Based Services (HCBS).
- 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.
- People with disabilities and chronic conditions who were at particularly high risk of infection with, or severe consequences from the virus, were not recognized as a priority population by many states when vaccines received emergency use authorization.
- Students with disabilities were cut off from needed in-person special education services and supports and were given last or no priority when schools attempted to preserve educational opportunity. Some students under the jurisdiction of the Bureau of Indian Education faced an especially challenging combination of Internet barriers on Indian and rural lands.
- People with disabilities have historically been underrepresented in the workforce even in robust economic times and the pandemic exacerbated this long-standing problem.
- 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.
- Both youth and adults who had mental health disabilities that predated the beginning of the pandemic experienced measurable deterioration over its course, made worse by a preexisting shortage of community treatment options, effective peer support, and suicide prevention support.
KEY RECOMMENDATIONS: To ensure the United States is prepared for a future pandemic or similar national health crisis, NCD’s key recommendations to policymakers include:
Congress or the Department of Health and Human Services (HHS) should require all hospitals and managed care plans that receive federal financial assistance to increase public transparency of, and nondiscrimination and due process within, crisis standard of care (CSC) guidelines and medical rationing policies adopted during public health emergencies and emergency surge situations.
HHS’ Office for Civil Rights (HHS OCR) should develop a Patient’s Bill of Rights for People with Disabilities on: 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.
HHS/Administration for Community Living (ACL), HHS OCR, and the Department of Justice (DOJ) should work together to establish a healthcare technical assistance project to inform a range of healthcare providers on civil rights issues regarding patients with disabilities.
Congregate Care Facilities
Centers for Medicare and Medicaid Services (CMS), ACL, Substance Abuse and Mental Health Services Administration (SAMHSA), Department of Housing and Urban Development (HUD), Federal Emergency Management Agency (FEMA), and DOJ should develop and implement a 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.
Centers for Disease Control and Prevention (CDC) should 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.
Congress should enact measures that include 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.
The U.S. Department of Education (ED) should direct school districts to provide compensatory education to students with disabilities to allow them to recover and regain skills. The right to and need for compensatory education should be presumed for children with disabilities who did not receive necessary instruction and supports during the COVID-19 pandemic.
ED and DOJ should issue a joint guidance document outlining the elements of accessible remote education for students with disabilities.
The Office of Personnel Management (OPM) should maintain maximum telework flexibility for all federal agencies on a permanent basis and ensure that federal employees with disabilities receive necessary, reasonable accommodations in their technology while working remotely and retain flexibility to work from their designated federal office as needed or desired.
All federal entities involved in public health, emergency management, and the provision of public announcements or briefings of broad public importance should prepare and disseminate information related to any pandemic or public health emergency in accessible formats, including providing sign language interpretation and/or captions during live and prerecorded video briefings; making all written materials available in alternative formats; and making all online materials accessible.
Mental Health and Suicide Prevention
States should expand the mental health workforce and peer support workforce, including through using HCBS dollars and mobile crisis dollars available through the American Rescue Plan and Certified Community Behavioral Health Center (CCBHC) funds.