The Impact of COVID-19 

on People with Disabilities

National Council on Disability

October 29, 2021
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

The Impact of COVID-19 on People with Disabilities

National Council on Disability, October 29, 2021

Celebrating 36 years as an independent federal agency

This report is also available in alternative formats. Please visit the National Council on Disability 

(NCD) website (www.ncd.gov) or contact NCD to request an alternative format using the following 

information:

ncd@ncd.gov Email

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202-272-2022 Fax

The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
National Council on Disability

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families.

Letter of Transmittal

October 29, 2021

President Joseph R. Biden Jr.

The White House

1600 Pennsylvania Avenue NW

Washington, DC 20500

Dear Mr. President,

On behalf of the National Council on Disability (NCD), I hereby transmit our statutorily mandated annual 

Progress Report for 2021. The report is also available on NCD’s website at www.ncd.gov. The report, 

The Impact of COVID-19 on People with Disabilities, examines COVID-19’s disproportionate negative 

impact upon people with disabilities in (1) accessing healthcare; (2) accessing direct care workers; 

(3) congregate care settings and transition; (4) education; (5) employment; (6) effective communication;

(7) mental health and suicide prevention services; and the congressional, federal, and state response.

To develop this report, NCD monitored pandemic-related developments, examined emerging 

research, and relied on stakeholder involvement. NCD began with two virtual convenings: the first 

with healthcare experts, bioethicists, direct care workers and advocates, independent living leaders, 

people with disabilities, and family members of people with disabilities to discuss the experiences 

of people with disabilities in healthcare, congregate care facilities (CCFs), direct care workers, and 

barriers to effective communication. The second convening was with educators, school administrators, 

employment attorneys, mental health and suicide prevention policy experts, people with disabilities, 

and parents of students with disabilities, to discuss education, employment, and mental health. This 

mixed participant engagement provided us with insights from individuals with expertise and personal 

experience on more than one topic area and from those who live at the intersection of multiple 

personal characteristics, such as age, race and ethnicity, income level, sexual orientation, gender 

identity, and religion.

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 our seven focus areas. The pandemic also 

exposed extreme disability bias, failures in modifying policies to accommodate the needs of people 

with disabilities, and gaps in disability data collection and antidiscrimination laws that need to be 

rectified before the next pandemic or public health emergency.

NCD’s 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

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

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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. 

■ Residents of CCFs such as nursing homes, assisted living homes, psychiatric facilities, and board

and care homes, where bedrooms, direct care workers, and amenities are shared, and infection

control is highly challenging, caught the virus and died in large numbers, largely due to lack of

personal protective equipment (PPE), close contact with others in confined settings, and the higher

susceptibility to the virus due to other health conditions. The institutional model was once again

shown to be detrimental to vulnerable individuals.

■ 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.

■ Physical, communication, and procedural barriers were common in both testing for COVID-19

and vaccination.

■ 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.

2 National Council on Disability
NCD’s key recommendations include:

Healthcare

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.

CMS should prioritize all CCFs for infection control purposes and ensure that they receive equipment 

such as test kits and proper PPE necessary to follow CDC guidelines in a similar health emergency. 

CMS should clarify that community providers conducting in-reach transition support to facility residents 

are “essential care providers,” not “visitors,” and should not be restricted from entering facilities during 

future pandemics or crises. 

Direct Care Workforce

Congress should enact federal legislation based on the principle of Universal Family Care, a social 

insurance program model for early childcare and education, paid family and medical leave, and longterm services and supports as envisioned by the National Academy of Social Insurance. 

Congress should ensure that future and proposed legislation, such as the Better Care Better Jobs Act, 

includes funding to improve direct care workforce wages and benefits and increase recruitment and 

retention. 

The Impact of COVID-19 on People with Disabilities 3
Education

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. 

Employment

The Equal Employment Opportunities Commission (EEOC) should clarify and enforce legal protections 

for workers with disabilities who seek telework, leaves of absence, and safety policy modifications 

as reasonable accommodations. The EEOC should offer guidance to employers in accommodating 

employees with needs that appear to conflict. 

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.

Effective Communication

HHS OCR and DOJ should direct hospitals and other healthcare entities to include in their 

nondiscrimination notices and staff training the recognition of policy modifications as part of a patient’s 

right to effective communication, in addition to the provision of auxiliary aids and services when 

needed by patients with disabilities to receive effective care. 

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.

State Hospital Associations should develop guidance and best practices for ensuring effective 

communication in hospitals and associated urgent care clinics during public emergencies, including the 

provision of qualified in-person interpretation and fully accessible telemedicine platforms consistent 

with the Web Content Accessibility Guidelines (WCAG) 2.1 standards.

Mental Health and Suicide Prevention 

Congress should permanently authorize telehealth flexibilities that enabled tele-mental health services 

while also ensuring that in-person services and hybrid in-person and virtual services are available 

options for those who need and want them. 

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. 

4 National Council on Disability
NCD appreciates your focus on equitable treatment for every American and believes that this report 

provides information to support needed changes to ensure equity for people with disabilities in a future 

pandemic or public health emergency. We stand ready to help you to achieve your equity goals and 

fortify existing protections and programs for people with disabilities. 

Respectfully submitted,

Andrés J. Gallegos

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the 

U.S. House of Representatives.)

The Impact of COVID-19 on People with Disabilities 5
National Council on Disability Members and Staff

Members

Andrés J. Gallegos, Chairman

Jim Brett, Vice Chair

Jim Baldwin

David D’Arcangelo

Munr Kazmir, M.D.

Rick Rader, M.D.

Neil Romano

Daniel C. Schreck

Mary G. Vought

Staff

Anne C. Sommers McIntosh, Executive Director

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Director of Administration, Finance, and Operations

Stacey S. Brown, Staff Assistant

Kimie Eacobacci, Legislative Affairs Specialist

Netterie Lewis, Administrative Support Specialist

Amy Nicholas, Senior Attorney Advisor

Nick Sabula, Public Affairs Specialist

Amged Soliman, Attorney Advisor

Ana Torres-Davis, Senior Attorney Advisor

Keith Woods, Financial Management Analyst

6 National Council on Disability
Contents

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Key Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Key Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Acronym Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Chapter 1: Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Context of COVID-19 and Disability Discrimination in Healthcare . . . . . .  3

Key Healthcare Discrimination Issues During the COVID-19 Pandemic . . .  3

Access to Personal Protective Equipment, COVID-19 Testing, 

Capacity to Shelter in Place and Isolate . . . . . . . . . . . . . . . . . . . . . .  4

Medical Rationing, Crisis Standards of Care, and Do Not 

Resuscitate Orders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Visitation Policies and Other Healthcare Policy Modifications 

and Accommodations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Accessible Vaccination and Vaccination Prioritization . . . . . . . . . . . . .  6

COVID-19 Data Collection—Infection, Hospitalization, 

Treatment, and Death Rates of People with Disabilities, 

Collected in Conjunction with Race, Ethnicity, Age, and 

Other Demographic Characteristics...

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Chapter 2: Impact of COVID-19 on People with Disabilities in Congregate 

Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

COVID-19 Had a Devastating Impact on People with Disabilities 

in Congregate Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

The Impact of COVID-19 on People with Disabilities 7
People with Disabilities were Stuck as Diversions and Transitions 

from CCFs Slowed to a Near Halt . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

COVID-19 Exacerbated Existing Civil Rights Violations 

Involving Needless Institutionalization and Segregation . . . . . . . . . . . .  9

More Could Have Been Done to Discharge and Divert People 

with Disabilities from CCFs during the Pandemic . . . . . . . . . . . . . . . . . .  9

Limited Federal Guidance for CCFs Hindered Responses 

During Early Days of COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  9

The Biden Administration Brought New Focus to People 

with Disabilities in CCFs, Though Many Steps Came Late 

and Others Remain Undone . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  9

Financing Community Services and Housing to Enable 

Transitions from CCFs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  10

Enhanced Medicaid Funding for HCBS . . . . . . . . . . . . . . . . . . . . . . . . 101

Using Medicaid “Appendix K” and Section 1135 Waivers 

to Cover Family Caregiver Support . . . . . . . . . . . . . . . . . . . . . . . . . . 102

FEMA Reimbursement for Emergency Housing . . . . . . . . . . . . . . . . . 102

New Funding for Housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104

Forthcoming Infrastructure Investments . . . . . . . . . . . . . . . . . . . . . . . 105

Better Collection and Analysis of the Impact of COVID-19 on 

People Living and Working in Congregate Care Facilities . . . . . . . . . . . . 106

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108

Chapter 3: The Direct Care Workforce . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113

Overview of Direct Care Workforce . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113

Direct Care Workforce and Family Caregiver Characteristics . . . . . . . . . . 114

Federal and State COVID-19 Responses to Direct Care Workers . . . . . . . . 118

PPE and COVID-19 Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118

COVID-19 Vaccination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

Enhanced Employment Wages and Benefits . . . . . . . . . . . . . . . . . . .  12

Medicaid and Medicare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

Federal Policy Proposals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

Social Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

8 National Council on Disability
Chapter 4: Education and COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

Students with Disabilities Before and After the Pandemic . . . . . . . . . . .  13

The Heavy Impact of the Pandemic on Low-Income 

Families with Children with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . .  13

Broadband Technology, Computer Equipment, and Related Supports . . .  13

Reasonable Accommodations, Supports, and Accessibility 

in Remote Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

In-Person Services and Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141

The Pandemic’s Impact on Native American Students 

with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146

Chapter 5: Employment and COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Employment of People with Disabilities Before and 

After the Pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Unemployment and Other Income and Job Supports . . . . . . . . . . . . . . .  15

Technology, Telework, and Remote Work . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Reasonable Accommodations and Leaves of Absence . . . . . . . . . . . . . .  15

Telework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Leaves of Absence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Accommodations for People with COVID-19–Vulnerable 

Household Members . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Masks and Other COVID-19 Safety Protocols at Work . . . . . . . . . . . .  16

Older Workers with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

People with Disabilities Earning Subminimum Wage at 

Sheltered Workshops . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Chapter 6: Effective Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Overview of Effective Communication Before and During 

the Pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Healthcare Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Face Masks and Physical Distancing . . . . . . . . . . . . . . . . . . . . . . . . .  17

In-Person Interpretation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

The Impact of COVID-19 on People with Disabilities 9
Assistive Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Telemedicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

No-Visitor Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174

Congregate Care Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Education Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

Remote Learning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

Modified In-Person Instruction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Hybrid Learning Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Government Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Chapter 7: Addressing the Impact of COVID-19 on Mental Health and Suicide . . . .  18

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

The Pandemic Has Had a Dramatic Effect on the Nation’s 

Mental Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Mental Health Impact on Healthcare Workers 

and Other Essential Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Mental Health Impact Resulting from Remote Work 

and from Increased Job Loss and Unemployment . . . . . . . . . . . .  18

Mental Health Impact on Children and Youth . . . . . . . . . . . . . . . . . . . 190

The Pandemic Has Limited Access to Mental Health 

Services at a Time When They Are Most Needed . . . . . . . . . . . . . . . . . . . 192

More Effective Suicide Prevention Strategies are Needed . . . . . . . . . . . . 193

Summary of Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 198

Appendix A: Convening Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  20

10 National Council on Disability
Acknowledgments

The National Council on Disability (NCD) thanks Mary Lou Breslin, Claudia Center, Sara Frank, Susan 

Henderson, MC Linthicum, Jennifer Mathis, Hongyu Min, Carly A. Myers, Brit Vanneman, and Silvia Yee 

for their work in developing this report.

The Impact of COVID-19 on People with Disabilities 11
12 National Council on Disability
Executive Summary

T his report examines over a year of life in 

a public health emergency as it occurred 

in real time for people with disabilities 

in the United States. Its prime focus points are 

healthcare, the direct care workforce, congregate 

care facilities (CCFs), education, employment, 

effective communication, and mental health and 

suicide prevention policy. The COVID-19 pandemic 

was marked by multiple crisis points that hit 

various communities unequally, depending on 

such factors as one’s age (older persons had 

far higher death rates upon infection), one’s 

job (e.g., healthcare worker, essential worker), 

where one lived (e.g., urban zip codes high on 

the social vulnerability index, rural locations), and 

the color of one’s skin 

(Black and Latino persons 

had disproportionately 

high death rates). The 

number of young children 

contracting the virus is 

rising. When the novel 

coronavirus first started claiming lives in the 

United States in early 2020, it did so in a country 

with entrenched economic, social, racial, and 

health disparities. By September 15, 2021, the 

nation had seen more than 41million cases 

and more than 660,000 deaths attributable to 

COVID-19, according to the Centers for Disease 

Control and Prevention (CDC).

Disability is not always singled out as a 

characteristic that is particularly relevant to 

COVID-19’s complex, tragic history. Even with 

nursing home deaths comprising approximately 

22 percent of U.S. deaths from COVID-19, that 

disproportionate number tends to be attributed 

to age and the circumstances of congregate 

living rather than disability and the way that longterm services and supports have been provided 

to people with disabilities for more than half a 

century. Anyone could become infected with the 

coronavirus, anyone could need hospitalization 

and treatment for COVID-19, everyone had to 

practice social distance and wear masks, and 

anyone could die from the disease, but these 

few universal facts did 

not result in the uniform 

impact of COVID-19 on 

people with disabilities. 

This report stands 

as witness to the

difference that disability 

made when the pandemic brought the United 

States to a halt.

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 in each of our seven focus 

This report stands as witness to the 

difference that disability made when 

the pandemic brought the United 

States to a halt

The Impact of COVID-19 on People with Disabilities 13
areas. The pandemic also exposed disability bias, 

failures in modifying policies to accommodate 

the needs of people with disabilities, and gaps 

in disability data collection and antidiscrimination 

law that need to be rectified before the next 

pandemic or public health emergency.

Key Findings

■ Residents of congregate care facilities 

such as nursing homes, assisted living 

homes, psychiatric facilities, and board 

and care homes, where bedrooms, direct 

care workers, and amenities are shared, 

and infection control is highly challenging, 

caught the virus a died in large numbers, 

largely due to lack of personal protective 

equipment (PPE), close contact with 

others in confined settings, and the higher 

susceptibility to the virus due to other health 

conditions. The institutional model was once 

again shown to be detrimental to vulnerable 

individuals.

■ People with disabilities of varying ages 

relied on direct care workers to aid with 

daily activities needed to remain functional 

in their communities, and neither they nor 

their workers could fully shelter in place 

or obtain needed personal protective 

equipment (PPE).

■ The growing shortage of direct care workers 

that existed prior to the pandemic got 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 catching or 

spreading the virus, leaving people with 

disabilities and their caregivers without 

aid, and placing people with disabilities at 

risk of losing their independence or being 

institutionalized

■ Researchers have increasingly documented 

how physicians and other healthcare 

providers hold implicit biases concerning 

disability that lead to a primary focus on 

the functional limitations of people with 

significant disabilities and an assumption 

that they have a low quality of life 

as a result. Those assumptions have 

guided treatment decisions, with deadly 

consequences.

■ People with intellectual and developmental 

disabilities, and those who were medically 

fragile and technology dependent, 

disabilities faced a uniquely high and explicit 

risk of being triaged out of COVID-19 

treatment when hospital beds, supplies, 

and personnel were scarce, denied the 

use of their personal ventilator devices 

after admission to a hospital, and at times, 

denied the assistance of critical support 

persons during hospital stays. Informal 

and formal Crisis Standards of Care (CSC), 

documents that guided the provision 

of scare healthcare in surge situations, 

targeted people with certain disabilities for 

denial of care.

■ People with disabilities and chronic 

conditions who were at particularly high risk 

of infection with, or severe consequences 

from, COVID-19 were not recognized 

as a priority population by many states 

when vaccines were given emergency 

use authorization and had to advocate 

from a position of weakness because of 

a longstanding failure to collect detailed 

functional disability data in healthcare.

14 National Council on Disability
■ Physical, online, communication, and 

procedural barriers remained common in 

multiple key activities that were commonly 

needed during the pandemic, such as the 

administration of testing for COVID-19 and, 

later on, vaccination.

■ Students with disabilities did not receive 

needed in-person special education 

services and supports that made learning 

possible and were given last or no priority 

when districts attempted to preserve 

educational opportunity. Some students 

with special education needs, who were 

under the jurisdiction of the Bureau of 

Indian Education, experienced 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.

■ Employed people with disabilities and the 

family members of people with disabilities 

encountered the difficult choice between 

the income needed from work and the 

social distance and isolation needed to keep 

people with high-risk disabilities safe from 

the coronavirus, especially in the face of 

gaps in disability employment protections 

such as the absence of the ability to seek 

leave as a care provider for a family member 

with disabilities.

■ Deaf, Hard of Hearing, Deaf-Blind, and 

Blind persons experienced a profound 

communication gulf as masks became 

commonplace, making lipreading impossible 

and sign language harder, while the virus 

made touch dangerous for blind persons 

and people with visual impairments who 

typically experience the world through 

touch.

■ The financial, social, and familial 

adjustments that had to be made over the 

course of the pandemic, in addition to the 

constant threat of contracting COVID-19 

itself, had a negative impact on everyone’s 

mental health, and mental health symptoms 

were experienced by some who acquired 

the virus. But 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.

In addition to these findings, we highlight that 

disability is not a characteristic that stands alone 

but one that intersects with all other aspects of a 

person’s identity such as age, race and ethnicity, 

income level, sexual orientation, gender identity, 

and religion. As a result, any one person with a 

disability can experience multiple barriers and 

discrimination related to any of the major topics 

covered in this report.

While people with disabilities have 

undoubtedly come a long way, in visibility, 

opportunity, and community integration since 

the first federal disability rights laws were 

passed in the 1970s and later, the pandemic has 

reemphasized that there still is considerable work 

to be done to achieve fully the objectives of those 

disability rights laws. The recommendations 

made in this report are meant to lead the way 

toward achieving a different status quo, one that 

The Impact of COVID-19 on People with Disabilities 15
values equal treatment and accommodation 

in the event of another pandemic or any other 

public health emergency.

Finally, the reality of the coronavirus as an 

evolving phenomenon, and the national and 

international real-time responses to it, mean 

that this report does not include findings or 

recommendations on some issues that remain 

unresolved, e.g., many U.S. states are working 

on issues concerning “vaccine passports” and 

how to establish vaccination status and for what 

purposes. Similarly, how to achieve the equitable 

vaccination of children, as well as equitable 

vaccination internationally, remains an open 

issue. Another example of an unresolved issue 

as of the conclusion of writing on this report is 

ongoing discussions among federal lawmakers 

on funding and infrastructure for home- and 

community-based services (HCBS), as well 

as the long-term federal or state commitment 

to community integration and accelerating 

deinstitutionalization in light of the risks to 

nursing home residents posed by any infectious 

emergency.

Key Recommendations

To ensure the United States is prepared for a 

future pandemic or similar national health crisis, 

NCD’s key recommendations include:

16 National Council on Disability
Healthcare

■ The Department of Health and Human Services (HHS) should require all hospitals, 

hospital systems, 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. These guidelines and policies 

should be clearly posted on all the entity’s websites and hospital and appropriate provider 

network websites.

■ HHS’ Office for Civil Rights (HHS OCR) should develop a Patient’s Bill of Rights for People 

with Disabilities, written in plain language and including information on the following rights 

that pertain to healthcare: effective communication, policy modifications, treatment without 

discrimination, access to personal support persons, use of personal medical equipment, 

physical accessibility, choice of less invasive reasonable treatment or health maintenance 

alternatives; having an Advance Directive, 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 freedom 

from assumptions about one’s quality of life and capacity to benefit from treatment or 

survive treatment because of the presence of a disability or particular condition.

■ The National Center for Health Statistics (NCHS) should work with state vital statistics 

offices to initiate revisions in the U.S. Standard Certificate of Death to include functional 

disability and HCBS consumer information in the demographic section of death certificates 

and obtain the approval of completed revisions from the HHS Secretary.

■ HHS/Administration for Community Living (ACL), HHS OCR, and Department of Justice 

(DOJ) should work together to establish a national healthcare technical assistance project to 

inform a range of professionals on civil rights issues regarding patients with disabilities. This 

would include providing healthcare providers, medical educators, professional associations, 

and public health authorities with information and training on implicit disability bias, the 

importance of policy modifications and reasonable accommodations as needed for effective 

healthcare, and the critical role that direct care workers and personal support persons play in 

maintaining the health and functional capacity of certain people with disabilities. ACL could 

play a central coordinating role over the Center, either as an independent entity or as an 

adjunct component of existing entities that provide disability expertise such as the regional 

Americans with Disabilities Act (ADA) Centers, while both HHS OCR and DOJ can provide 

technical and legal expertise.

The Impact of COVID-19 on People with Disabilities 17
Congregate Care Facilities

■ Congress should enact the Better Care Better Jobs Act, which would expand access to 

HCBS and strengthen the HCBS workforce.

■ Centers for Medicare and Medicaid Services (CMS), Administration for Community 

Living (ACL), Substance Abuse and Mental Health Services Administration 

(SAMHSA), Department of Housing and Urban Development (HUD), Federal 

Emergency Management Agency (FEMA), and Department of Justice (DOJ)

should launch a multiagency national strategy to mitigate the risks of infectious disease 

transmission in CCFs and address the civil rights concerns that continue to impact 

the lives of people with disabilities in CCFs. That strategy should involve a coordinated 

effort among key federal agencies including, at a minimum, CMS, ACL, SAMHSA, HUD, 

FEMA, and DOJ. The agencies should clarify how community services can be paired with 

housing resources to ensure that people with disabilities have the opportunity to receive 

services in the most integrated setting and avoid needless risk of infection and death. 

They should issue guidance identifying strategies and resources available to state and local 

governments to facilitate transitions and diversions from CCFs, flexibilities that may be 

used, and how these resources factor into public entities’ Olmstead obligations.

■ 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 to ensure that 

the physical distancing required for infection control can be effectively done in CCFs.

■ CMS should prioritize all CCFs for infection control purposes and ensure that they receive 

equipment such as test kits and proper PPE from federal, state, and local governments 

that is necessary to follow CDC guidelines in any similar health emergency. CMS should 

recognize and clarify that community providers conducting in-reach transition support to 

facility residents are “essential care providers,” not “visitors,” and should not be restricted 

from entering facilities during future pandemics or crises. All CCFs should receive priority 

designation for vaccine allocation.

■ State Medicaid Agencies should expand Medicaid HCBS services, including through 

taking advantage of new HCBS funding made available through the American Rescue 

Plan Act.

18 National Council on Disability
Direct Care Workforce

■ Congress should enact the Better Care Better Jobs Act, the American Families Plan, the 

U.S. Citizenship Act of 2021, and the HCBS Access Act.

■ Congress should enact federal legislation based on the principle of Universal Family Care, 

a social insurance program model for early childcare and education, paid family and medical 

leave, and long-term services and supports as envisioned by the National Academy of 

Social Insurance. Built on the models of Social Security and Medicare, Universal Family 

Care is an integrated approach to care policy that recognizes long-standing social inequities 

based on race, ethnicity, and disability.

■ Congress should ensure that future and proposed legislation, such as the Better Care 

Better Jobs Act, which builds on the American Rescue Plan Act’s expanded funding for 

Medicaid HCBS, includes funding to improve direct care workforce wages and benefits and 

increase recruitment and retention. This funding should include a mechanism to ensure 

that workers’ wages and benefits are adequate for the present and adjusted as necessary 

in the future to ensure a stable workforce that is paid a living wage. It should also require 

as a condition of receiving such funding that states either provide directly or require that 

home healthcare agencies, CCFs, and other service providers provide paid family and 

medical leave for their direct care workers. States should also be required to ensure that 

direct care workers have access to adequate, affordable healthcare insurance either as an 

employer or union-sponsored benefit, through the Health Insurance Marketplace, or by 

other means.

Education

■ Congress should enact measures that include funds dedicated to compensatory education 

for students with disabilities who did not have necessary educational services and 

supports during the pandemic and who experienced disruption and regression in their 

behavioral and educational goals. Priority should be given to compensatory education 

for children with disabilities living in low-income families, children with disabilities who 

needed—but did not receive—in-person instruction and supports, and Native American 

children with disabilities.

(continued)

The Impact of COVID-19 on People with Disabilities 19
■ Congress should enact measures to better prepare and plan for the education of children, 

including children with disabilities, during a future public health crisis or other national 

emergency by including funds dedicated to making high-speed broadband internet 

available to and affordable for everyone, and particularly for low-income families, homeless 

families, and families in rural and other areas where high-speed internet access is not 

consistently available. Federal recovery efforts must continue to expand connectivity in 

Native American communities, with a focus on Bureau of Indian Education (BIE) school 

communities and American Indian reservations. Funds should be allocated soon to 

ensure that every student has an appropriate laptop or tablet for remote education so that 

education is not interrupted by another emergency.

■ 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. Given the extended crisis and national emergency caused 

by the pandemic, the extent and duration of gaps in educational services, and the 

known impacts on children with disabilities, families should have a right to “opt in” to 

compensatory education without any requirement of an extensive individualized factual 

showing. Sustained access to compensatory education will be critical for many students 

with disabilities, as they were virtually excluded from all education for more than 

one year.

■ ED and DOJ should issue a joint guidance document outlining the elements of accessible 

remote education for students with disabilities. The guidance should review accessibility 

requirements for digital platforms and digital documents and should emphasize the 

necessity of designing remote education to be fully accessible to students who are Deaf, 

Hard of Hearing, and/or blind, or who have other disabilities. The guidance should review 

necessary auxiliary aids and services such as real-time captioning, accessible transcripts, 

sign language interpreting, and alternative formats. The guidance should specify the 

educational contexts in which automatic captioning is not appropriate and should detail 

the features necessary to properly integrate sign language interpreters into a video 

platform.

Education: continued

20 National Council on Disability
Employment

■ Congress, in the event of a future national disaster or public health emergency, should pass 

legislation immediately to provide dedicated unemployment and relief funds to stabilize 

households, including those of part-time workers, self-employed individuals, and gig 

workers, who are disproportionately people with disabilities, working families with children 

with disabilities, individuals with caregiving obligations, and people with disabilities receiving 

Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) benefits.

■ The Equal Employment Opportunities Commission (EEOC) should work to clarify and 

enforce legal protections for workers with disabilities who seek telework, leaves of absence, 

and safety policy modifications as reasonable accommodations. The EEOC should offer 

guidance to employers in accommodating employees with needs that appear to conflict.

■ 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.

■ The Department of Labor (DOL) and OPM should issue joint guidance on effective 

telework tools and highlight the benefit of telework for many people with disabilities. The 

guidance should describe the need for accessibility in remote work platforms and allow 

agencies to use the platforms that are most accessible based on employee needs.

■ Congress should task the Government Accountability Office (GAO) with examining the 

gaps in employment protections that occurred during the COVID-19 pandemic, including 

for people with disabilities who were vulnerable to severe outcomes from COVID-19, and 

for people who have COVID-19–vulnerable household members, or who are caregivers to 

COVID-19–vulnerable individuals.

Effective Communication

■ HHS OCR and DOJ should direct hospitals and other healthcare entities to include in their 

nondiscrimination notices and staff training the recognition of policy modifications as part 

of a patient’s right to effective communication, in addition to the provision of auxiliary aids 

(continued)

The Impact of COVID-19 on People with Disabilities 21
and services when needed by patients with disabilities to receive effective care. Concrete 

examples should be provided, such as giving exceptions to face mask mandates when 

an individual cannot wear a mask by reason of their disability and to general “no-visitor” 

policies when needed for disability-related communication needs.

■ All federal entities involved in public health, emergency management, and the 

provision of public announcements or briefings of broad public importance should 

disseminate information related to any pandemic or public health emergency in accessible 

formats, including information about the nature of the emergency, mitigating actions that 

individuals should take, available federal and state assistance and support, and available 

medical treatments. This includes 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.

■ State Hospital Associations should work with state departments of public health and 

disability advocacy groups to develop guidance and best practices for ensuring effective 

communication in hospitals and associated urgent care clinics during public emergencies, 

including:

● the provision of clear, adaptable masks to hospital staff, to be used when an N-95 mask 

is not required;

● the provision of qualified in-person interpretation when a person with a disability 

requests it, with PPE made readily available to interpreters;

● fully accessible telemedicine platforms to ensure effective communication for people with 

communication disabilities, including ensuring that their interface supports three-way video 

visits with interpreters and that the platform and its content are screen-reader accessible, 

consistent with the Web Content Accessibility Guidelines (WCAG) 2.1 standards.

Effective Communication: continued

Mental Health and Suicide Prevention Policy

■ Congress should permanently authorize telehealth flexibilities that enabled tele-mental 

health services while also ensuring that in-person services and hybrid in-person and virtual 

services are available options for those who need and want them.

22 National Council on Disability
■ SAMHSA and state mental health agencies should robustly promote effective suicide 

prevention efforts focusing on approaches that address the underlying problems that 

cause people to consider suicide. These should include helping individuals connect with 

housing services and referring individuals to vocational rehabilitation or other employment 

programs for people with disabilities.

■ CMS should encourage states to expand peer support services and highlight the value 

of peer support, particularly by individuals with lived experience with mental health 

disabilities as well as with the racial, ethnic, and cultural backgrounds of the communities 

they serve.

■ States should take steps to expand the mental health workforce and particularly the peer 

support workforce, including through using new HCBS dollars and mobile crisis dollars 

available through the American Rescue Plan and new block grant and Certified Community 

Behavioral Health Center (CCBHC) funds. States should ensure that their mental health 

systems include robust peer support services.

■ Schools and School Districts should ensure that remote and in-person mental health 

services are available to students who need them, even in pandemics or health emergencies 

when students are required to attend school remotely.

Mental Health and Suicide Prevention Policy: continued

Methodology

This report tries to build a picture of what 

people with disabilities experienced in their lives 

during the COVID-19 pandemic. It is divided into 

seven main chapters that examine healthcare 

discrimination, the direct care workforce, 

CCFs, education, employment, effective 

communication, and mental health and suicide 

prevention policy. Other areas that are important 

to the seven main topics, such as transportation 

and food security, are also touched on in the 

chapters either because the pandemic either 

changed them or revealed access barriers in 

their operation for people with disabilities.

This report is based on multiple sources. 

First, there were two virtual convenings that 

took place on November 10 and November 12, 

2020. The first convening gathered healthcare 

experts, bioethicists, direct care workers and 

advocates, independent living leaders, people 

with disabilities, and family members of people 

with disabilities to discuss the experiences of 

people with disabilities during the pandemic 

with healthcare discrimination, CCFs, the 

direct care workforce, and barriers to effective 

communication. The second convening gathered 

educators, school administrators, employment 

attorneys, mental health and suicide prevention 

The Impact of COVID-19 on People with Disabilities 23
policy experts, people with disabilities, and 

parents of students with disabilities, to discuss 

the education, employment, and mental health 

experiences of people with disabilities.

Each convening included topic-specific 

small group discussions as well as large group 

sessions where participants had an opportunity 

to address connections among the topics. Each 

convening also included two to three people 

with disabilities or family members of people 

with disabilities sharing their experiences during 

the pandemic relating to one or more of the 

featured seven topic areas. This mixed mode of 

participant engagement was useful for capturing 

the insights of individuals who had expertise 

and/or personal experience on more than one 

topic area, or who lived at the intersection of 

multiple personal characteristics. Participants in 

both the large and the small group forums had 

an opportunity to raise observations and make 

recommendations. One-on-one follow-up emails 

and conversations took place with convening 

participants and provided additional details 

and information.

Second, the authors have had an ongoing 

literature review on the core topic areas and 

COVID-19 from November 2020 through to 

May/June 2021. News coverage, policy 

analysis, and scientific and legal journal articles 

were constantly published during this period 

as the pandemic progressed in real time. 

As well, preexisting literature and research on 

existing disparities experienced by people with 

disabilities in all topic areas before COVID-19 

were also examined. A selection of relevant 

federal, state, and local policies and guidance 

related to the pandemic was examined, as well 

as drafts of new bills or new laws drafted or 

passed in response to COVID-19. Finally, this 

report is informed by interactions with people 

with disabilities who sought advocacy and legal 

assistance while trying to enforce disability 

civil rights laws in their own lives.

Each chapter of this report has topic-specific 

findings and recommendations along with an 

analysis on the topic. While each chapter is written 

so that it can be sensibly read on its own, the 

entire report presents a much fuller picture of how 

people with disabilities and disability communities 

fared during the pandemic. The most significant 

findings ad highest-priority recommendations are 

presented collectively in the Executive Summary, 

organized according to the major topic area meant 

to be addressed and specifying the entity to 

which the recommendation is directed. The full 

group of recommendations for each individual 

chapter is organized according to the entity to 

which it is directed.

24 National Council on Disability
Acronym Glossary

ACA Affordable Care Act

ACIP Advisory Committee on Immunization Practices

ACL Administration for Community Living

ACS American Community Survey

ADA Americans with Disabilities Act of 1990

ADHD Attention Deficit Hyperactivity Disorder

ADL(s) Activity(ies) of Daily Living

ARPA American Rescue Plan Act of 2021

ASL American Sign Language

BIE Bureau of Indian Education

BRFSS Behavioral Risk Factor Surveillance System

CARES Coronavirus Aid, Relief, and Economic Security Act of 2020

CART Communication Access Realtime Translation

CAMS Collaborative Assessment and Management of Suicidality

CBT Cognitive Behavioral Therapy

CCBHC Certified Community Behavioral Health Center

CDC Centers for Disease Control and Prevention

CDPH California Department of Public Health

CCFs Congregate Care Facilities

COVID-19 Coronavirus Disease 2019

CSC Crisis Standards of Care

CVAC Community Vaccine Advisory Committee (California)

DNR Do Not Resuscitate

DOJ U.S. Department of Justice

DOL U.S. Department of Labor

DREDF Disability Rights & Education Defense Fund

The Impact of COVID-19 on People with Disabilities 25
ECCE Early Child Care and Education

EEOC Equal Employment Opportunity Commission

EUA Emergency Use Authorization

FAPE Free and Appropriate Public Education

FCC Federal Communications Commission

FDA U.S. Food and Drug Administration

FEMA Federal Emergency Management Agency

FFCRA Federal Families First Coronavirus Response Act

GAO Government Accountability Office

HEROES The Health and Economic Recovery Omnibus Emergency Solutions Act

HCBS Home- and Community-Based Services

HHS U.S. Department of Health and Human Services

HIPAA Health Insurance Portability and Accountability Act of 1996

HOPWA Housing Opportunities for Persons with AIDS

HRSA Health Resources and Services Administration

HUD U.S. Department of Housing and Urban Development

IADLs Instrumental Activities of Daily Living

IDEA Individuals with Disabilities Education Act

IEP Individualized Education Program

LTCFs Long-Term Care Facilities

LTSS Long-Term Services and Support

NASEM National Academies of Science, Engineering, and Medicine

NCD National Council on Disability

NCHS National Center on Health Statistics

NFCSP National Family Caregiver Support Program

NSPL National Suicide Prevention Lifeline

HHS OCR U.S. Department of Health and Human Services Office for Civil Rights

OPM Office of Personnel Management

PASRR preadmission screening

PFML Paid Family and Medical Leave

POLST Physician Orders for Life-Sustaining Treatment

PPE Personal Protective Equipment

Promotoros “Promotores de salud” (community health worker in Spanish)

REL Race, Ethnicity, and Language

SAMHSA Substance Abuse and Mental Health Services Administration

SNAP Supplemental Nutrition Assistance Program

26 National Council on Disability
SSI Supplemental Security Income

SSDI Social Security Disability Insurance

TTP TeleType

UFC Universal Family Care

USDA U.S. Department of Agriculture

VRI Video Remote Interpreting

The Impact of COVID-19 on People with Disabilities 27
[W]hen people with disabilities lost their lives because they were 

unnecessarily housed in CCFs where infectious diseases cannot be controlled, 

or COVID-19 treatment was denied because of discriminatory medical 

rationing, or because states failed to recognize that people with significant 

disability need priority for vaccination because they are subject to higher risks 

of infection and death, these were not only “pandemic losses.” These lives

were lost due to the devaluation of the lives of people with disabilities 

28 National Council on Disability
Introduction

W hen the first case of COVID-19 in 

the United States was officially 

confirmed in January 2020, people 

with disabilities were living their lives: attending 

schools, working, raising families, enjoying 

their communities, and planning for the future. 

The pandemic caused by the novel coronavirus 

upended the lives of people with disabilities 

just as it disrupted the lives of nondisabled 

persons, but this statement does not reveal the 

full story. By 2020, people with disabilities had 

spent decades fighting for equal opportunity 

and their civil rights. Key federal laws such as 

Section 504 of the Rehabilitation Act of 1973,1

the Individuals with Disabilities Education Act 

(IDEA),2 and the Americans with Disabilities Act3

had helped people with disabilities integrate into 

their communities, receive improved educational 

services, and increase their presence in the 

workforce, but many barriers remained before 

the pandemic struck. The impact of the pandemic 

on people with disabilities cannot be understood 

without laying the critical groundwork of what 

living with disabilities looked like immediately 

before the pandemic. This introduction provides 

context for the report using brief topical 

“snapshots” of disability discrimination that were 

exacerbated by the pandemic.

Prior to the pandemic, health and healthcare 

disparities already exposed people with 

disabilities to heightened risk for poor health 

outcomes.4 Moreover, despite the fact that 

people with disabilities are a population subject 

to healthcare disparities, many healthcare 

professionals continue to see the poor health 

outcomes of people with disabilities as an 

inevitable function of disability rather than an 

avoidable consequence of accessibility barriers, 

lack of needed modifications in policies and 

procedures, and explicit and implicit bias among 

providers.5 In 2019, NCD reported that the 

disability bias of healthcare providers leads 

many providers to “critically undervalue life 

with a disability,”6 representing a real threat to 

people with disabilities who may be denied 

life-saving care due to physicians relying on 

stereotypes about the lives of people with 

disabilities, including the common assumption 

that someone who cannot walk or who 

cannot talk has no quality of life. In addition to 

assumptions and attitudinal barriers, the lack of 

accessible examination and medical equipment in 

medical care means that people with disabilities, 

specifically people with mobility disabilities, 

receive substandard primary care compared to 

people without disabilities.7 When people with 

disabilities require a period of acute care, they 

can encounter denials of their personal care 

attendants or support persons, even though 

they benefit greatly from having their regular 

The Impact of COVID-19 on People with Disabilities 29
assistants in the hospital. Prior to the pandemic, 

hospital policies on support persons were 

opaque and varied greatly among institutions 

and among providers, leading to harmful medical 

results.8 As a result of these factors, people with 

disabilities entered the pandemic in a far worse 

position than people without disabilities. They 

found themselves in need of intensive care or 

life-sustaining services and devices, and being 

treated by emergency room physicians who 

typically had little or no extended contact with 

patients who go through their daily lives with 

chronic disabilities,9 and who were quick to deem 

them expendable in a situation where medical 

resources were becoming scarce. Notably, 

those physicians who acknowledged ableist 

medical rationing policies that occurred during 

the pandemic tended to 

be specialists who work 

regularly with people 

with disabilities.10

The pandemic 

brought renewed 

attention to the medical, social, and economic 

vulnerability of those living in CCFs or institutions. 

The history of people with physical, mental, 

or developmental disabilities is illustrated 

by involuntary institutionalization in terrible 

conditions, even where a facility’s origins may 

have been benign.11 CCFs are usually justified on 

the basis that people with significant disabilities 

could not otherwise survive or stay well, yet 

recent research across states has found that 

those states where residents have higher 

measures of implicit disability prejudice also 

institutionalize more people, even controlling 

for state size, and these same states tend to 

spend more on institutional funding, controlling 

for both state size and wealth.12 These facts 

indicate that disability prejudice has more to do 

with the assumption that people with disabilities 

need to be cared for in nursing homes than the 

objective health needs of people with disabilities. 

The disability community has long fought to 

avoid the overuse and misuse of institutions, 

and this battle was brought to a head in the U.S. 

Supreme Court decision Olmstead v. L.C. in 

1999.13 The Court held that people with disabilities 

must receive community-based care in the 

least restrictive environment possible if they are 

qualified. Unfortunately, many remain confined in 

institutions because community-based services 

and supports are lacking. Medicaid, the largest 

single payer of home- and community-based 

services (HCBS) has a historic “institutional 

bias” because federal law requires states to 

cover institutional care in 

nursing homes but makes 

Medicaid coverage 

of community living 

through HCBS optional 

for Medicaid enrollees,14

even though services in the community are less 

expensive than institutional care. The reliance on 

CCFs for lower-income people with disabilities 

is worsened when housing expenses rise. For 

example, the approximately 4.8 million people 

with disabilities who rely on SSI cannot afford 

to live in their own home, even where homebased care might be available.15 When natural 

disasters and public emergencies occurred prior 

to the pandemic, people with disabilities were 

often relegated to institutions in contravention 

of federal law that prohibits institutionalization.16

When people without disabilities lose their jobs, 

their income, their housing, their health coverage, 

or their personal support network, they are not 

confronted with the specter of institutionalization 

[P]eople with disabilities entered the 

pandemic in a far worse position 

than people without disabilities

30 National Council on Disability
as are people with disabilities, and especially 

people with disabilities who have long-term 

services and supports (LTSS) needs. People 

with significant disabilities must have access 

to equally effective 

healthcare and needed 

services and supports 

in their communities, 

or they are at risk of 

losing functional capacity 

and being subject to 

institutionalization.

The well-being of 

people with disabilities 

who have LTSS needs 

has always been closely intertwined with the 

well-being of the direct care workforce, including 

personal care attendants, home health aides, 

and nursing assistants, who can be employed 

in institutional, agency, and individual-pay 

community contexts. Due to the low rates 

of pay and difficulty with obtaining full-time 

positions, direct care workers can be holding 

multiple jobs at the 

same time,17 though 

doing so can inhibit 

close relationships with 

individual clients that are 

of mutual benefit.18 If 

people with disabilities 

are to realize their rights 

under Olmstead and 

avoid institutionalization, 

they must have access 

to a reliable HCBS 

workforce that is stable in all respects—pay, 

benefits, job satisfaction, working conditions, 

and availability. The availability of HCBS 

permitting persons with disabilities to live 

in the community is the alternative to living 

in CCFs, and Medicaid, which issues HCBS 

waivers to transition people out of institutions 

to the community, or to keep a person at risk 

of institutionalization 

in their home with 

proper supports,19 is 

subject to all kinds of 

restrictions and policy 

disagreements among 

federal and state 

lawmakers. Well before 

the pandemic, the 

direct care workforce 

was already subject to 

frequent turnover and a shortage of providers 

who could supply personal care services 

throughout the country, particularly as an aging 

U.S. population added to the demand. Direct 

care workers are often in short supply due to 

low wages, the difficulty of maintaining fulltime work, and the lack of health insurance for 

many.20 In 2019, one in six direct care workers 

lived below the federal 

poverty level.21 The direct 

care workforce before 

2020 was inconsistent 

because workers had 

the option of leaving 

their positions for better 

paying jobs; thus, people 

with disabilities have 

long been struggling to 

find and maintain direct 

care workers necessary 

for their continued health and, for many, even 

their independence.

Education and employment opportunities are 

among the many opportunities that are lost when 

When people without disabilities 

lose their jobs, their income, their 

housing, their health coverage, or 

their personal support network, they 

are not confronted with the specter 

of institutionalization as are people 

with disabilities 

If people with disabilities are to 

realize their rights under Olmstead

and avoid institutionalization, they 

must have access to a reliable 

HCBS workforce that is stable in 

all respects—pay, benefits, job 

satisfaction, working conditions, 

and availability

The Impact of COVID-19 on People with Disabilities 31
a person is living in a CCF or community with 

insufficient HCBS to maintain health and critical 

function. When students with disabilities don’t 

receive educational services that are guaranteed 

under law, it can affect 

their social, physical, and 

emotional well-being and 

their greatest chances for 

economic self-sufficiency 

for the rest of their lives, 

as well as the lives of 

the family members 

who may have to act as 

unpaid caregivers for 

extended periods. NCD reported in 2018 that 

the longstanding federal underfunding of the 

Individuals with Disabilities Education Act was 

already adversely affecting the ability of students 

with disabilities to receive Free and Appropriate 

Public Education (FAPE), placing many 

students with disabilities at a disadvantage.22

There was also a national shortage of special 

education providers, and qualified staff for inhome education can be wholly unavailable.23

Coronavirus and the 

public health emergency 

have only exacerbated 

these existing 

disadvantages.

For years, people 

with disabilities have 

been chronically 

unemployed and 

underemployed despite 

the ADA prohibitions on 

discrimination in employment.24 Though the ADA 

prompted a national increase in employment 

for people with disabilities when it was passed 

in 1990, there are still significant numbers of 

people with disabilities “persistently locked out 

of employment,” many of whom rely on federal 

public assistance programs.25 For working-age 

people with disabilities prior to COVID-19, almost 

“two-thirds of workingage Americans [were] left 

out of the labor market 

all together.”26 Despite 

the many opportunities

for employment that 

an increasingly digital 

world may provide jobhunters with disabilities, 

the fastest-growing 

and most dynamic technology-based industries 

have the poorest representation of people with 

disabilities.27 Looking at employment in the 

context of education and healthcare for people 

with disabilities is instructive. The failure to fund 

the IDEA, discussed above, means that young 

people with disabilities entering the workforce are 

twice as likely as their peers without disabilities 

to have no high school diploma, leaving them 

unqualified for many jobs.28 Young people with 

disabilities (ages 20–24) 

were nearly 30 percent 

less likely to be employed 

than their peers without 

disabilities. Further, a 

certain portion of people 

with disabilities who are 

counted as employed 

are working for less than 

the minimum wage in 

sheltered workshops, as 

a consequence of the Fair Labor Standards Act 

section 14(c).29 For people with disabilities with 

significant chronic care needs, and especially 

for those with personal care assistance needs, 

Direct care workers are often in 

short supply due to low wages, 

the difficulty of maintaining fulltime work, and the lack of health 

insurance for many. In 2019, one in

six direct care workers lived below 

the federal poverty level

When students with disabilities 

don’t receive educational services 

that are guaranteed under law, it 

can affect their social, physical, 

and emotional well-being and their 

greatest chances for economic 

self-sufficiency for the rest of their 

lives 

32 National Council on Disability
Medicaid provides critical services and supports 

that cannot be easily replicated or afforded. 

However, the income limits on both Medicaid 

and the Social Security programs that are a 

gateway to Medicaid enrollment can also act as a 

reverse disincentive to employment and income. 

People with disabilities who get a job and earn 

too much or get too many hours can fall off the 

“Medicaid cliff” and find themselves losing 

the very healthcare services that enable them 

to work and thrive in their communities while 

still not earning enough to pay out of pocket for 

the HCBS that private 

insurance rarely covers. 

While federal Medicaid 

buy-in and work incentive 

programs can alleviate 

some of the problems 

raised by the Medicaid 

cliff, the programs 

are administratively 

challenging to understand 

and follow and usually 

offer limited employment 

supports.30

People with sensory 

disabilities were met with 

barriers in communication during emergencies 

well before the COVID-19 pandemic. In 2014, 

in the wake of several devastating hurricanes, 

NCD reported that the communications needs 

of people with disabilities were not being 

met in emergency settings by either federal 

or local agencies.31 The failures of effective 

communication included, but were not limited 

to, a lack of American Sign Language (ASL) 

interpreters in televised announcements, web 

sites with emergency information not accessible 

to screen readers, inaccessible emergency 

notification systems, and inaccessible shelter 

locations.32 Even outside of an emergency 

context, complaints and lawsuits continue to 

be brought as education,33 state,34 and private 

business entities35 ignore basic effective 

communications for thousands of people with 

disabilities, failing to provide sign language in 

complex legal matters and only sending benefit 

eligibility and coverage information to blind 

persons in print letters. All too often, covered 

entities seek an easy way out of providing 

effective communication and place an ongoing 

burden on the person 

with a disability to “make 

do” and adjust to the 

situation, rather than 

follow the dictates of 

federal law. For example, 

the National Association 

of the Deaf advises that 

qualified sign language 

interpreters are still 

often the best option 

in medical settings and 

that the use of Video 

Remote Interpreting 

(VRI) should be reserved 

for emergencies, reporting with concern 

that overreliance on VRI has detrimentally 

impacted Deaf and Hard-of-Hearing healthcare 

consumers.36 Failures of communication 

continued to be unsurprisingly pervasive during 

the pandemic,37 placing people with disabilities 

at an increased likelihood of danger, from the 

highest levels of public briefings from the White 

House when the pandemic began (see chapter 6, 

section E on Government Activities) all the way 

through to vaccination, a process that began 

almost a year into the public emergency.38

Failures of communication 

continued to be unsurprisingly 

pervasive during the pandemic, 

placing people with disabilities at an 

increased likelihood of danger, from 

the highest levels of public briefings 

from the White House when the 

pandemic began ... all the w

through to vaccination, a process 

that began almost a year into the 

public emergency

The Impact of COVID-19 on People with Disabilities 33
People with a range of disabilities were 

already at higher risk of experiencing depression 

and suicidality before the pandemic, due in part 

to social isolation, abuse, and increased likelihood 

of living in poverty.39 These facts were made 

worse by the lack of accessible mental healthcare 

for people with disabilities,40 particularly for 

people with physical disabilities who found most 

counselors’ offices in inaccessible buildings and 

tele-mental health services unavailable. Though 

the Affordable Care Act (ACA) made progress 

toward expanding mental healthcare for Medicaid 

coverage, millions of Medicaid-eligible Americans 

continued to lack access to behavioral health 

services.41 Medicaid 

services reimburse 

behavioral healthcare 

providers at lower rates, 

which contributes to a 

lack of mental healthcare 

providers serving people 

with disabilities who rely 

on Medicaid.42 Those with 

employment or private 

insurance face costcontrol and other embedded gatekeeping barriers 

to obtaining the mental and behavioral health 

services they need to maintain well-being and 

functional capacity in their lives.43 Stigma, ableism 

in society, and a lack of coordinated expertise in 

the medical field also exacerbated mental health 

problems for people with disabilities. People with 

co-occurring mental or behavioral health and 

other disabilities encountered a lack of experience 

and fragmented communication among their 

providers, leading to undiagnosed or untreated 

mental health symptoms.44

One final thing to note in the 17 months since 

COVID-19 first appeared is the growing awareness 

in the United States and globally of systemic 

racism and implicit bias against people of color, 

and how Black, Brown, and Indigenous persons 

have been subjected to authoritarian violence. In 

light of increasingly documented links between 

disability and race/ethnicity,45 this report tries to 

note where and when compounded disparities 

of treatment and outcome occurred during 

the pandemic; for example, in the educational 

opportunities of Indigenous children with 

disabilities or in the application of crisis standards 

of care to significantly disabled Black persons.

The phrase “a rising tide lifts all boats” 

is generally used to explain how changes in 

circumstance or policy 

that directly benefit 

some segments in 

society will nonetheless 

benefit all in society. 

Similarly, a pandemic is a 

great equalizer because 

the coronavirus’s 

inherent capacity to 

infect, hospitalize, or kill 

does not change with a 

given individual’s personal characteristics. Such 

truisms disregard the extent to which people 

with disabilities, as with other identifiable 

groups such as Black and Brown persons or 

low-income female employees, have endured 

particular and avoidable harms during the 

pandemic that are rooted in longstanding 

physical and programmatic barriers as well as 

implicit bias and systemic discrimination. When 

an emergency hits, people with disabilities 

typically have fewer reserves to draw upon, 

their options for housing and healthcare are 

more limited, and it can be harder for them to 

recover once the immediate emergency has 

When an emergency hits, people 

with disabilities typically have fewer 

reserves to draw upon, their options 

for housing and healthcare are more 

limited, and it can be harder for 

them to recover once the immediate 

emergency has passed

34 National Council on Disability
passed. The pandemic has also revealed how 

much employees with disabilities are among 

those first to be let go and last to be rehired in 

an economic crisis. If we focus on the harms 

that have been universally imposed on all 

people, we pay insufficient attention to the loss 

of disability-specific programs and activities 

that were still needed 

to ensure effective and 

equal opportunities for 

people with disabilities. 

A rising tide might float 

all boats, but some of 

the boats were deep in 

the sea already, on top of 

schools of fish, while others were barely clear of 

sandbars or caught in shoals, far from economic 

opportunity and freedom from want. In a world 

where personal characteristics historically 

determine where one’s boat is located in a sea 

of unequal opportunity, some will be no closer to 

recovery and well-being post-pandemic.

This report will provide data on major life 

areas where people with disabilities of all ages 

experienced fallout from the pandemic. We 

focus specifically on healthcare, congregate care 

facilities, the direct care workforce, mental health 

and suicide policy, education, employment, 

effective communication, and elements of 

transportation. Beyond 

data, which is not always 

available, we try to 

describe what people 

with disabilities have 

been living through 

as the coronavirus 

raced through the 

country. It is the story of disability communities 

forced to cope with historic systemic failures 

that continued to have implications for their 

economic, social, and educational well-being 

and recommends action to avoid leaving this 

population behind in a future pandemic or public 

health emergency.

The pandemic has also revealed 

how much people with disabilities 

are among those “first to be let 

go and last to be rehired” in an 

economic crisis

The Impact of COVID-19 on People with Disabilities 35
36 National Council on Disability
Chapter 1: Healthcare

Context of COVID-19 and Disability 

Discrimination in Healthcare

T he story of COVID-1946 in the world and 

in the United States is one of loss: lost 

opportunities to prepare for the pandemic, 

lost time to institute contract tracing and testing, 

lost chances to rally behind population protocols 

that would lessen infection, and, ultimately, a 

terrible loss of physical, mental, emotional, and 

financial health and life. The global pandemic has 

raised a multitude of 

urgent national systemic 

issues involving the 

economy, education, 

employment, business, 

politics, culture, and race, 

but more than 17 months 

and 34 million cases later, 

the pandemic remains 

at its core a healthcare 

crisis. It is no surprise, 

then, that for people with 

disabilities who have long 

endured healthcare discrimination and barriers to 

equally effective healthcare, COVID-19 was not 

only a healthcare crisis but an extended test of 

the nation’s recognition of their human and civil 

rights.

Early press reports on coronavirus cases and 

deaths in the United States stressed the virus’ 

outsize impact on older persons and people 

with preexisting conditions, giving the false 

reassurance that healthy younger people had 

little to fear. Practically, this approach placed 

pressure on people with disabilities to withdraw 

from society while simultaneously lulling the 

wider public into a false sense of security about 

relying on hand washing, social distancing, mask 

wearing, and other behaviors that would reduce 

community infection rates of a virus that is 

transmitted through the 

air. It was an approach 

that cast people with 

disabilities and older 

persons as intrinsically 

distinct from the rest of 

society and portrayed 

them as inevitable 

victims of a new virus 

that the rest of us could 

just “shrug off” like a 

cold.47 When reports of 

rapid infection and high 

death rates exploded across the country and 

within LTCFs, the primary discussion was about 

the impact of age and rarely acknowledged that 

more than 14 percent of the residents in those 

facilities are people with disabilities younger 

than 65 years.48 The idea that COVID-19 death 

rates could be diminished by rapidly diverting 

When reports of rapid infection 

and high death rates exploded 

across the country and within 

LTCFs, the primary discussion was 

about the impact of age and rarely 

acknowledged that more than 

14 percent of the residents in those 

facilities are people with disabilities 

younger than 65 years

The Impact of COVID-19 on People with Disabilities 37
and deinstitutionalizing people with disabilities 

from nursing homes was not widely considered, 

seriously embraced, or explicitly included 

or funded in federal and state emergency 

measures. New York, New Jersey, Pennsylvania, 

and Michigan adopted the reverse policy, ordering 

nursing homes in the state to admit residents 

even if they were COVID-19 positive and 

irrespective of insufficient coronavirus testing, 

PPE, and infection control procedures in care 

facilities.49

There is no question that the pandemic made 

it harder for many people with disabilities to 

be in the world, and equally no doubt that the 

pandemic exacerbated existing discrimination and 

inequities experienced by people with disabilities 

when they sought or received healthcare, as 

described in this report’s introduction. This 

point was strongly noted in each stakeholder 

convening that we held. Stereotypes about 

people with disabilities, inaccessible diagnostic 

and treatment equipment, and systemic 

difficulties in obtaining needed accommodations 

have been documented for years, and led 

to healthcare disparities for everyone, from 

women with developmental disabilities seeking 

gynecological services to Deaf persons needing 

surgical interventions.50 The dissemination and 

use of CSC by states and hospital facilities during 

the pandemic, which would allow delay or denial 

of care based on a person’s disability or age, was 

a high-stakes example of long-standing disability 

stereotypes and implicit bias among healthcare 

systems and providers.

It is important to point out the fact that civil 

rights laws protecting people with disabilities 

apply broadly to the healthcare industry. Federal 

and state disability nondiscrimination laws have 

included healthcare entities for decades. Virtually 

every hospital or healthcare facility is subject to 

disability rights law because they receive federal 

financial assistance through, for example, treating 

Medicaid or Medicare patients,51 they are part 

of the programs or activities of a state or local 

government,52 or because they are a private 

healthcare entity that is subject to Title III of 

the ADA.53 Health insurers that offer insurance 

products, including managed care plans, on 

a federal or state health insurance exchange 

are subject to Section 1557 of the ACA, which 

incorporates the disability nondiscrimination 

protections of Section 504.54 At this point, 

healthcare entities have no excuse for failing 

to recognize that they have nondiscrimination 

obligations that include requirements for physical 

accessibility, effective communication, and the 

obligation to make reasonable modifications in 

policies, practices, or procedures55 for people 

with disabilities.

Key Healthcare Discrimination Issues 

During the COVID-19 Pandemic

Five aspects of COVID-19 affected the health and 

well-being of people with disabilities during the 

pandemic. In one sense, people with disabilities 

contended with the same challenges of avoiding 

infection, finding effective treatment in the event 

of infection, and obtaining vaccination once 

available that any nondisabled individual faced. 

But this view discounts how the U.S. healthcare 

system was rife with physical, communication, 

programmatic, and attitudinal barriers to 

healthcare for people with disabilities. People 

with disabilities were simply not at the same 

starting line in healthcare when the pandemic 

hit. The public health emergency led to a few 

possibly temporary healthcare delivery changes 

that may benefit some people with disabilities, 

38 National Council on Disability
such as broader coverage and availability 

of telehealth.56 For the most part, however, 

COVID-19 worsened existing barriers.

People with disabilities experienced multiple 

overlapping layers of healthcare discrimination 

during the pandemic in the following specific 

areas: access to personal protective equipment, 

COVID-19 testing, and the capacity to shelter 

in place and isolate; medical rationing, CSC, 

and DNR orders; visitation policies and 

other healthcare policy modifications and 

accommodations; and accessible vaccination 

and vaccination prioritization. Data collection on 

infection, hospitalization, treatment, and death 

rates of people with disabilities in the healthcare 

and public health context 

is also addressed, as a 

decades-long dearth in 

the collection of detailed 

disability and functional 

status information 

has left people with 

disabilities facing not 

only the burden of being overlooked, but also 

bearing the burden, as a group and sometimes 

individually, of trying to prove their capacity to 

respond to treatment or their higher susceptibility 

to COVID-19 before full treatment and vaccination 

prioritization would be extended to them.

At its worst, these and additional barriers 

during the pandemic led to people with 

disabilities losing their lives. Approximately 

one-third of reported COVID-19 deaths in the 

United States throughout the pandemic occurred 

in LTCFs, among a group that makes up only 1 

percent to 3 percent of the nation’s population 

depending on what is included in the LTCF 

category beyond nursing homes.57 We still do 

not know if these statistics tell the true number 

of deaths in these facilities or for those living 

outside facilities. While nursing home residents 

are generally thought of primarily as seniors, 

they are also people with disabilities and include 

residents aged 31 to 64 years who make up 14 

percent of the nursing home population.58

Long-term care statistics are likely 

undercounted for various reasons, including the 

fact that federal data requirements do not apply 

to the skilled nursing facilities where hundreds 

of thousands of people with disabilities live and 

the complete lack of standardized or historical 

gathering of death rates among LCTFs.59

Unfortunately, even though data on the impact of 

the coronavirus in LTCFs is both incomplete and 

unreliable, it is among 

the only data that is 

available on COVID-19 

infection, hospitalization, 

and death rates of people 

with disabilities during 

the pandemic. That is 

largely because disability 

status is not a recognized component of mortality 

data in this country.

The U.S. Standard Certificate of Death 

contains fields for a limited degree of personal 

information that the funeral director is 

responsible for filling in with information derived 

from an “informant” (usually a relative).60 These 

fields include age/date of birth, sex, race, 

length of residence in a county/state, whether 

someone has served in the armed forces, marital 

status and occupation at time of death, names 

of spouse and/or parents, level of educational 

attainment, and the informant’s name. There 

is no space for recording disability status as a 

demographic characteristic of a deceased person. 

The middle “cause of death” section on the 

People with disabilities were simply 

not at the same starting line in health 

care when the pandemic hit 

For the most part, ... COVID-

worsened existing barriers

The Impact of COVID-19 on People with Disabilities 39
certificate must be filled out by the person who 

pronounces or certifies death, usually a medical 

examiner or coroner.61 This section requires an 

“underlying cause of death” and has room for 

“conditions, if any, leading to” the primary cause 

of death, as well as “other significant conditions 

contributing to death but not resulting in the 

underlying cause.” There are also a few questions 

concerning tobacco use, current or past 

pregnancy, and the manner of death that have 

public health value to the NCHS, which eventually 

receives and compiles 

death certificate 

information.

When organizations 

such as the Kaiser Family 

Foundation sounded 

the early alarm on how 

Black, Hispanic, and 

American Indian and 

Alaska Native populations 

were bearing a disproportionate burden of 

COVID-19 cases, hospitalization, and deaths,62 the 

analysis was grounded in state data on provisional 

death counts made available by the NCHS, as 

well as race/ethnicity population distribution 

information from surveys such as the American 

Community Survey.63 Because disability status

as a demographic fact is not required or asked 

on death certificates, it is extremely difficult to 

establish even the bare fact of how many people 

with disabilities died from COVID-19, and we 

know even less about the personal characteristics 

or health of those who have died. As a result, 

more time-consuming and original analytical 

research has to be conducted. The elevated 

risks of coronavirus infection and death among 

nonelderly people with disabilities who receive 

Medicaid HCBS, for example, was established 

using source data from published private 

insurance data claims, Medicaid data, National 

Health Interview Survey data, and a gradually 

growing stream of medical research on specific 

“high-risk” health conditions and disabilities.64

It is still not, however, an actual count of the 

numbers of COVID-19 infections or deaths of 

people with disabilities who have died directly as 

a result of contracting COVID-19, or indirectly as 

a consequence of being unable to gain access 

to needed care or losing necessary services 

and supports during the 

pandemic.65 CDC has 

reported, with regard to 

medical care, that:

Avoidance of both 

urgent or emergency 

and routine medical 

care because of 

COVID-19 concerns 

was highly prevalent among unpaid 

caregivers for adults, respondents with two 

or more underlying medical conditions, and 

persons with disabilities. For caregivers 

who reported caring for adults at increased 

risk for severe COVID-19, concern about 

exposure of care recipients might contribute 

to care avoidance. Persons with underlying 

medical conditions that increase their risk 

for severe COVID-19 are more likely to 

require care to monitor and treat these 

conditions, potentially contributing to their 

more frequent report of avoidance. (Internal 

citations omitted)66

For people with disabilities, the fact that 

they vanish as a demographic population 

when COVID-19 deaths are reported except in 

Because disability status as a 

demographic fact is not required 

or asked on death certificates, it is 

extremely difficult to establish 

how many people with disabilities 

died from COVID-19 

40 National Council on Disability
so far as they overlap with the population of 

institutionalized persons raises an overarching 

discrimination issue that has persisted 

throughout the public health emergency. The 

Supreme Court’s 1999 decision in Olmstead v. 

L.C.67 established that people with disabilities 

have the right to receive state or another public 

entity’s services in the most integrated setting. 

Yet, as the next two chapters on CCFs and the 

direct care workforce document, persistent 

systemic, economic, and legal barriers hinder 

the capacity of people 

with disabilities to live 

independently in the 

communities of their 

choice with appropriate 

supports and services. 

The “institutional bias” in 

Medicaid means public 

funding of institutional 

long-term care is 

mandatory, although 

states have the option 

of providing HCBS.68 At the same time, the 

direct care workforce’s decades of poor pay and 

a lack of worker protections for physically and 

emotionally demanding work have contributed 

to a worsening shortage of the direct care 

workforce on which people with disabilities 

rely.69 During the pandemic, the long-standing 

insufficiency of emergency direct service back-up 

systems for those living in the community also 

threatened people with disabilities as their usual 

personal care assistants became ill or had to take 

care of ill family members or supervise children 

when schools and daycares were closed.

The public health emergency starkly revealed 

how institutionalized people with disabilities 

are at risk of extreme isolation from family and 

community and subject to infection and loss 

of life. Yet a number of states at the height of 

COVID-19 adopted policies that required nursing 

homes to readmit COVID-19 positive residents 

from hospitals, placing all residents and staff at 

heightened risk, rather than provide residents with 

safer community placements and HCBS using 

innovative practices such as those discussed in 

the following chapter. This disregard for the safety 

of people with disabilities is yet another example 

of the degree to which people with disabilities 

were discounted in the 

pandemic—left off of 

basic data gathering on 

death certificates, left out 

of emergency planning 

and distribution of 

supplies, and subject to 

ongoing stereotypes and 

assumptions about their 

health and quality of life 

by healthcare providers, 

which led to further 

deadly consequences for people with disabilities 

who needed urgent intensive care at the height of 

the pandemic. Although the federal government 

funded programs in May 2020 to address some 

emergency preparedness issues related to the 

needs of people with disabilities, the results of 

that work could not be realized quickly enough 

to change the unnecessary deaths and general 

treatment of people with disabilities during this 

pandemic.70

The life of a person with disabilities is neither 

more nor less valuable than the life of a person 

without disabilities. But when people with 

disabilities lost their lives because they were 

unnecessarily housed in CCFs where infectious 

diseases cannot be controlled, or COVID-19 

[A] number of states at the height 

of COVID-19 adopted policies that 

required nursing homes to readmit 

COVID-19 positive residents from 

hospitals, placing all residents 

and staff at heightened risk, rather 

than provide residents with safer 

community placements and HCBS 

The Impact of COVID-19 on People with Disabilities 41
treatment was denied because of discriminatory 

medical rationing, or because states failed to 

recognize that people with significant disability 

need priority for vaccination because they are 

subject to higher risks of infection and death, 

these were not only 

“pandemic losses.” 

These lives were lost 

due to the devaluation of 

the lives of people with 

disabilities, a devaluation 

that is rooted in the 

medical establishment 

and that continues to 

pervade our educational, 

economic, cultural, and 

social systems.

Access to Personal Protective 

Equipment, COVID-19 Testing, Capacity 

to Shelter in Place and Isolate

Once the highly infectious nature of the 

coronavirus became widely known, federal 

agencies and infectious disease experts 

recommended key strategies for staying safe 

that included the consistent use of personal 

protective equipment, regular testing for 

COVID-19, and isolating in place as much as 

possible, including self-quarantine in the event 

of a positive COVID-19 test. People with a range 

of disabilities encountered numerous barriers to 

achieving these strategies.

The public demand for PPE such as fitted 

masks, gloves, and gowns, as well as hand 

sanitizer and wipes, quickly overwhelmed the 

U.S. supply, which was simultaneously subject to 

a worldwide shortage.71 Some individual market 

abuses and instances of PPE price gouging 

became almost legendary.72 Letting purchasing 

and distribution responsibilities for PPE float 

freely in an overheated free market environment 

pitted states against the federal government and 

individual consumers against workplaces and 

healthcare facilities. Those individuals with the 

time and resources to 

readily monitor for, drive 

to, and quickly snap up 

supplies were instantly 

at an advantage. 

Individuals with 

disabilities who could not 

drive or carry packages 

on their own, or shop 

or assess their PPE 

needs independently, 

and who did not have 

internet access or funds 

to spare on unbudgeted expenses, found it 

extremely difficult to find and maintain a PPE 

supply. People with long-term care needs were 

especially vulnerable to coronavirus infection 

because the direct care workers who came to 

their homes to provide care were often the last 

in line to have access to PPE, as is documented 

in chapter 3.

Another shortage that left people with 

disabilities at a disadvantage was the 

inaccessibility of many COVID-19 testing 

sites, including the procedures for making 

testing appointments. The Federal Emergency 

Management Agency (FEMA) noted that people 

with disabilities nationwide encountered 

“[l]imited access to effective communication, 

facilities, transportation, and programs that allow 

for improved access to COVID-19 treatment, 

testing sites, and Alternate Care Sites. . . .” Drivethrough testing sites became common in many 

parts of the country because they allowed for 

Individuals with disabilities who 

could not drive or carry packages 

on their own, or shop or assess 

their PPE needs independently, and 

who did not have internet access 

or funds to spare on unbudgeted 

expenses, found it extremely 

difficult to find and maintain a PPE 

supply

42 National Council on Disability
greater social distancing between those seeking 

and those administering tests, but FEMA further 

warned that “[p]eople with disabilities may not 

be able to access COVID-19 testing sites which 

include, but are not limited to, community-based 

drive-through testing sites. Drive-through testing 

is especially inaccessible in urban areas, where 

fewer people have access to cars.”73

Additional testing barriers included physical 

inaccessibility and procedural barriers such as 

long lines, inaccessible online portals for making 

test appointments, and a lack of sign language 

or other interpreters on-site given that anyone 

who has not taken a test could be shocked by 

the physical invasiveness of the procedure if an 

explanation for how the procedure works is not 

effectively communicated.74

Though test manufacturer shortages, unclear 

information about the accuracy and interpretation 

of different types of tests, and delays in getting 

results affected every person who sought 

testing, the problems had a disproportionate 

impact on persons with disabilities who relied on 

personal care assistants. Given the low minimum 

wages common to direct care workforce jobs, as 

well as the fact that individuals with disabilities 

may typically need less than 40 hours per week 

of personal care attendance, many direct care 

workers work for more than one client or in both 

institutional and community settings. When 

PPE and timely testing are not consistently 

available in any one of those situations, it left the 

direct care worker with an elevated coronavirus 

infection risk and constant uncertainty about 

The Impact of COVID-19 on People with Disabilities 43
their COVID-19 status. In turn, those negatively 

affected individuals with significant disabilities 

who received direct care assistance because 

they faced additional risks of death upon infection 

from the way their disabilities could interact 

with the virus and the risk that they could 

be prioritized lower to receive treatment for 

COVID-19.

Barriers to Goods and Services

Multiple factors combined to turn “shelter in place” orders for persons with disabilities into an 

extended period of isolation with little access to needed COVID-19 resources or other needed 

goods and services. People with specific disabilities experienced the following barriers:

■ The common use of opaque face masks diminished communication for Hard-of-Hearing 

and Deaf persons trying to meet their daily needs and get healthcare.

■ Transit systems that stopped completely or cut routes and hours made it difficult 

for people with mobility, vision, and other disabilities to get beyond their immediate 

neighborhoods, not only because routes themselves were cut but because it was difficult 

to get timely, accurate, and fully accessible information about changed routes and times.75

■ Reduced accessibility to transportation in conjunction with lower income levels76 and 

having high-risk conditions such as a compromised immune system or other chronic health 

conditions left some individuals with disabilities unable to get essentials such as groceries

and medicines.77 Food insecurity among U.S. households grew overall during the pandemic 

but “[a]dults who have a disability—in particular adults who have a disability and are not in 

the work force—also experience more than two times the rate of food insecurity as adults 

who do not have a disability.”78 Some food banks began distributing food using a drivethrough model, but not all food banks adapted to provide home delivery to people with 

disabilities who did not independently drive or lift groceries. In rural areas, grocery and food 

delivery options were already limited and were further limited by store policies that did not 

allow people with Supplemental Nutritional Assistance Program (SNAP) or food stamps to 

use those benefits for home delivery of groceries.79

■ Individuals at high risk of death from contracting COVID-19 had to risk exposure to receive 

necessary healthcare such as infusions or therapy, or forego the services and therapies 

that allowed them to maintain function and good health; some healthcare providers 

stopped certain treatments altogether.

■ Individuals who needed assistance with activities of daily living and became infected with 

the virus faced being unable to keep or find new personal care assistants for their most 

basic needs, given the heightened risk of infection.

44 National Council on Disability
In short, people with disabilities who lived 

in the community were confronted daily with 

choosing between life necessities such as food 

and healthcare and high risks of infection with 

COVID-19, which led to the risk of forgoing 

personal assistance from a direct care worker 

who might not be able to access PPE or of 

losing assistants who became ill or stopped 

working because they were afraid of bringing 

the virus home to their families.

News media quickly covered the “perfect 

storm” of medically 

and/or cognitively 

vulnerable and often 

older residents living 

in facilities with welldocumented infection 

control problems and 

tragic state policies that 

encouraged keeping or 

even returning infectious 

residents at some 

facilities, but similar 

attention has not been 

given to the situation of 

people with disabilities 

living in the community, 

for whom there is 

a dearth of detailed 

demographic data. Without this data and 

analyses, it is extremely hard to get a full picture 

of how much emergency Medicaid and other 

measures developed as a response to the 

pandemic benefitted people with disabilities in 

the community at large, and even more difficult 

to try and see, for example, if subpopulations 

within the disability community, such as Black 

or Brown persons, face discernible compound 

discrimination.

One study that tried to determine if COVID-19 

had a disparate impact among people with 

disabilities who are subject to sociogeographic 

disadvantage analyzed county-level data on 

confirmed COVID-19 cases from Johns Hopkins 

with a number of disability variables from the 

2018 American Community Survey. What may 

be the first study published in the United States 

to look at disability from an explicit intersectional 

lens during the pandemic found that:

Greater COVID-19 

incidence rate 

is significantly 

associated with: (1) 

higher percentages

of PwDs [people with 

disabilities] who are 

Black, Asian, Hispanic, 

Native American, 

below poverty, under 

18 years of age, and 

female; and (2) lower 

percentages of PwDs 

who are non-Hispanic 

White, above poverty, 

aged 65 or more 

years, and male, after 

controlling for spatial 

clustering. . . . Socio-demographically 

disadvantaged PwDs are significantly 

overrepresented in counties with higher 

COVID-19 incidence compared to other 

PwDs.80

This study helps demonstrates the need 

for much better data collection on people with 

disabilities and their experiences during COVID-19 

in ways that will allow for a nuanced look at how 

[T]esting barriers included physical 

inaccessibility and procedural 

barriers such as long lines, 

inaccessible online portals for 

making test appointments, and 

a lack of sign language or other 

interpreters on-site given that 

anyone who has not taken a test 

could be shocked by the physical 

invasiveness of the procedure 

if an explanation for how the 

procedure works is not effectively 

communicated

The Impact of COVID-19 on People with Disabilities 45
Findings from Study of Disability 

from an Intersectional Lenses

Greater COVID-19 incidence rate is significantly 

associated with: (1) higher percentages of 

PwDs [people with disabilities] who are Black, 

Asian, Hispanic, Native American, below 

poverty, under 18 years of age, and female; 

and (2) lower percentages of PwDs who are 

non-Hispanic White, above poverty, aged 65 

or more years, and male, after controlling for 

spatial clustering. . . .Socio-demographically 

disadvantaged PwDs are significantly 

overrepresented in counties with higher 

COVID-19 incidence compared to other PwDs.

disability, for example, makes a further difference 

to the health disparities that Black persons and 

people of color already face because of race.

Medical Rationing, Crisis Standards of 

Care, and Do Not Resuscitate Orders

The issue of medical rationing and how 

intensive care beds, treatment, equipment, 

and personnel would be made available during 

a period of widespread simultaneous virus 

infection emerged early during the pandemic. 

Stories of overwhelmed health systems and 

providers in Italy were soon followed by surge 

circumstances closer to home in places such 

as New York City. A medical surge occurs when 

the number of patients needing care is greater 

than a hospital or health system’s capacity to 

46 National Council on Disability
serve those patients. When a surge threatens, 

some facilities have policies to guide doctors 

and staff on the standards of care that should 

be applied when there are not enough beds, 

medical supplies or equipment, or trained staff 

to provide a normal level of care (i.e., doing 

everything possible to save every life) to every 

current or imminently expected patient. In 

response, some states revived or put out CSC 

guidelines in spring 2020.

The application of CSC guidelines during 

the pandemic profoundly affected people with 

disabilities, family 

members, disability 

advocates, and even 

many members of 

the public who were 

surprised that they could 

be denied medical care 

at the moment in which 

it was most needed. Why 

did a different set of rules 

evolve, and how could 

those rules apply when 

so few had provided 

input or even knew what the rules were?

What might be termed the “modern era” 

of CSC guidelines in the United States can be 

traced to the terrorist attacks of September 11, 

2001, and subsequent fears of anthrax attacks. 

As the federal Agency for Healthcare Research 

and Quality (AHRQ) started to work on national 

plans to respond to bioterrorism and public 

health emergencies, it came to recognize that 

an event with mass casualties could at least 

temporarily overwhelm local or regional health 

systems and prevent the application of normal 

standards of medical care. AHRQ convened 

experts in “the fields of bioethics, emergency 

medicine, emergency management, health 

administration, health law and policy, and 

public health” in August 2004, and eventually 

published “Altered Standards of Care in Mass 

Casualty Events.”81 The document states 

explicitly that the overall goal of altering 

standards of care in a mass casualty event is 

“to save as many lives as possible.”82 The Institute 

of Medicine subsequently held a series of 

workshops and published a 2009 letter report 

on developing CSC guidelines for disaster 

situations.83 The letter 

report concluded that:

“[i]n an important 

ethical sense, entering 

a crisis standards 

of care mode is 

not optional—it is a 

forced choice, based 

on the emerging 

situation. Under such 

circumstances, failing 

to make substantive 

adjustments to care operations—i.e., not to 

adopt crisis standards of care—is very likely 

to result in greater death, injury, or illness.” 

The committee also concluded that there 

is an urgent and clear need for a single 

national guidance for states with crisis 

standards of care that can be generalized 

to all crisis events and is not specific to a 

certain event.84

This short background on CSC reveals 

that when CSC guidelines are triggered and 

how they apply are thought of as matters 

The application of CSC guidelines 

during the pandemic profoundly 

affected people with disabilities, 

family members, disability 

advocates, and even many 

members of the public who were 

surprised that they could be denied 

medical care at the moment in 

which it was most needed

The Impact of COVID-19 on People with Disabilities 47
for medical and policy experts. The Institute 

of Medicine letter report was written in 

response to a request by the HHS Office of 

the Assistant Secretary for Preparedness 

and Response. Subsequent publications by 

both AHRQ and the Institute of Medicine 

addressing CSC criteria similarly involved 

convenings of experts. It is unclear whether 

any of the federal or academic entities that 

worked on these CSC reports prioritized 

participation or engagement with members 

of the public who would be directly affected 

by CSC guidelines, though AHRQ describes 

“issues related to populations with special 

needs” as an “important nonmedical” issue. 

The tendency toward “expert delegation” is 

highlighted in a recent paper that analyzes 

how state and hospital CSC guidance changed 

over the course of the pandemic in response 

to the assertion of disability rights and 

nondiscrimination.85

CSC guidelines varied considerably among 

states, with some several years old and designed 

for an indeterminate public health emergency or 

a generic “flu” epidemic/pandemic, and others 

updated or developed specifically for the highly 

infectious novel coronavirus. As COVID-19 cases 

and hospitalizations spiked in several states in 

the spring of 2020, the disability community 

became increasingly aware of the impact that 

CSC guidelines could have on individuals with 

disabilities who sought medical treatment upon 

infection with the coronavirus. People with 

disabilities and disability advocates recognized 

how CSC language approved by medical and 

policy experts discriminated, both explicitly 

and implicitly, on the basis of disability in the 

following ways:

Methods of Discrimination in CSC Guidelines

1. Categorical exclusion on the basis of specific diagnosis or categories of disability: One 

example of a categorical exclusion is found in Florida’s 2011 CSC guideline that barred 

from hospital admission individuals with “complex disorders with significant neurological 

component and prognosis for imminent expected lifelong assistance with most basic 

activities of living (i.e., toileting, dressing, feeding, respiration).”86 Another example is 

found in Colorado’s CSC guideline that lists “cystic fibrosis with post-bronchodilator FEV1 

<30% or baseline Pa02 <55 mm Hg” as criteria for excluding an individual from admission 

or transfer to critical care.87 The origins of the cystic fibrosis exclusion can be traced to a 

2004 CSC guideline developed in Ontario, Canada, that based this diagnostic exclusion on 

a study published in 1992 that used cohort data derived between 1977 and 1989. In short, 

the categorical exclusion of people with cystic fibrosis who meet certain clinical criteria 

was based on 40-year-old mortality data.88 There is no reason to think that other states 

48 National Council on Disability
and hospital systems were or are using the most current or even more current medical 

research when developing criteria for deprioritizing individuals with certain disabilities or 

health conditions, especially where CSC guidelines were developed in the midst of an 

ongoing emergency situation. Individuals with intellectual or developmental disabilities 

and their families in Washington and Alabama raised strong allegations that those states’ 

CSC guidelines discriminate against people with cognitive disabilities by deprioritizing 

their access to ventilators. Alabama’s CSC guideline from early 2020 stated that “persons 

with severe mental retardation, advanced dementia or severe traumatic brain injury may 

be poor candidates for ventilator support” and “persons with severe or profound mental 

retardation, moderate to severe dementia, or catastrophic neurological complications 

such as persistent vegetative state are unlikely candidates for ventilator support.”89 The 

state’s CSC guideline was revised in April 2020 after disability rights groups filed a formal 

discrimination complaint with HHS OCR.90

2. Application of medical rationing or triage criteria that allow or encourage physicians to 

import their subjective assumptions about a patient’s length or quality of life: An example 

of this can be found in Washington State’s CSC guideline that states that individuals 

can be considered for removal to out-patient or palliative care on the basis of “[b]aseline 

functional status (consider loss of reserves in energy, physical ability, cognition and 

general health).“91 Given that hospital physicians will be unfamiliar with the energy levels, 

physical ability, cognition levels, or general health of virtually every patient brought to 

the hospital with COVID-19, this appears to be an open invitation for physicians to make 

admission and treatment decisions that rest on how a physician interprets the current 

“functional status” of a person with disabilities.

3. Relying on physician assessments of years of remaining life in the long or medium term, 

despite the notorious and established inaccuracy of such assessments: Some CSC 

guidelines prioritize the goal of saving “life years” rather than saving lives. Pennsylvania, 

for example, considers a patient’s “prognosis for long-term survival,” assessing a patient’s 

comorbid conditions with the goal to “save the most life-years.”92 (See Pennsylvania 

Department of Health.) A goal of maximizing life years not only shortchanges the value of 

both people with disabilities and older persons, it invites physicians to make predictions 

about life expectancy even though they are notoriously bad at doing so.93 It also penalizes 

people with disabilities with conditions that appear to have shorter life spans, regardless 

of whether that information reflects unequal medical treatment, physician stereotypes 

Methods of Discrimination in CSC Guidelines: continued

(continued)

The Impact of COVID-19 on People with Disabilities 49
about a disability, or a dearth of medical research into a particular condition, or is simply 

outdated.94

4. Failing to recognize or make any kind of adjustment for the impact of disability on the 

clinical measures that were applied to determine patient priority for COVID-19 treatment:

Many CSC guidelines elevated the use of medical assessment tools such as the 

Sequential Organ Failure Assessment (SOFA), developed as a way to measure how likely 

patients’ with sepsis were to survive in the near term, as a way to objectively assign a 

clinical priority score to individual patients for COVID-19 treatment. However, these tools 

commonly use variables that fail to take disability into account when they should. For 

example, the SOFA includes the Glasgow Coma Score as a component that measures 

a patient’s consciousness level partly through their ability to articulate intelligible words. 

People with developmental, speech, hearing, or other disabilities may not be able to 

articulate intelligible words but that would not signal anything about their conscious 

functioning. As another example, clinicians should use clinical judgment to adjust SOFA 

scores downward (the higher the score the lower the chances of survival) as appropriate 

to account for chronic baseline levels of physiological functional impairment that are not 

caused by COVID-19, such as low oxygenation ratios for individuals with post-polio or 

complex neuromuscular conditions who use ventilation to support the muscles around 

the lungs rather than because of any functional incapacity in the lungs themselves. It 

is discriminatory to not adjust the application of SOFA or other tools so that they do 

not automatically and unjustly equate long-term functional impairments with lower 

survivability.95

5. Refusing to allow individuals to use their personal ventilators during hospitalization and 

maintaining the possibility of redistributing private ventilators: People with a range of 

disabilities use personal ventilators to assist their breathing for some or all of their day. 

This equipment is personally calibrated to the individual user and medically necessary 

for maintaining that individual’s life and function. Other persons with disabilities may use 

personal ventilators on a more intermittent “as needed” basis. Personal ventilator users 

became concerned that some CSC guidelines would allow hospitals to reallocate personal 

ventilators for the use of patients deemed to have a better chance of benefitting from 

COVID-19 treatment; some community members became fearful that not only would 

they be denied treatment if they arrived at a hospital with COVID-19, they risked active 

harm and death if their ventilator were taken from them.96 Disability rights advocates in 

Kansas and in New York raised concerns about personal ventilator reallocation with the 

Methods of Discrimination in CSC Guidelines: continued

50 National Council on Disability
HHS Office for Civil Rights last spring,97 though the concern has been raised in New York 

since 2009.98 New York’s Governor Cuomo issued an executive order in April 2020, calling 

upon nonhospital facilities to give up their ventilators as much as possible so they could 

be used in intensive care units (ICUs) for COVID-19 treatment.99 Nursing homes were not 

captured in the executive order, but a nursing home in Long Island voluntarily lent 11 of its 

16 ventilators out to a hospital when asked to do so.100 This specific concern of personal 

ventilator allocation resonates strongly within the disability community and raised the 

specter of medical experts making decisions that would lead directly to the death of 

people with disabilities. Some of these experts have pointed out that “taking away 

someone’s PV [personal ventilator] is a direct assault on their bodily and social integrity, 

that PVs should not be part of reallocation pools, and that triage protocols should be 

immediately clarified and explicitly state that PVs will be protected in all cases.”101

Methods of Discrimination in CSC Guidelines: continued

We cannot know whether the above practices 

found in CSC guidelines were developed with 

discriminatory intent, but the practices, if acted 

upon, would deny life-saving care based on a 

preexisting disability. The presence or absence 

of individual or even systemic malice is neither 

relevant nor a defense. As disability rights 

advocates pointed out:

Congress 

intended disability 

nondiscrimination 

protections to reach 

not only discrimination 

that is the result of 

“invidious animus,” but 

also of “thoughtlessness,” “indifference,” 

and “benign neglect.” The implementing 

regulations make clear that illegal 

discrimination includes providing “an aid, 

benefit, or service that is not as effective 

in affording equal opportunity to obtain the 

same result, to gain the same benefit, or to 

reach the same level of achievement” as that 

provided to people without disabilities; and 

also “eligibility criteria that screen out or tend 

to screen out an individual with a disability 

or any class of individuals with disabilities 

from fully and equally 

enjoying any service, 

program, or activity.” 

No provision in the 

ADA, Section 504, 

or Section 1557 of 

the ACA nor in any 

other federal law 

authorizes the waiver 

of these requirements during a public health 

emergency. [Internal citations omitted]102

The CSC guidelines highlighted above and 

others like them are discriminatory when their 

The CSC guidelines ... and others li

them are discriminatory when their 

application tends to automatically 

place people with disabilities in a 

lower priority category for receiving 

COVID-19 treatment

The Impact of COVID-19 on People with Disabilities 51
application tends to automatically place people 

with disabilities in a lower priority category for 

receiving COVID-19 treatment. The guidelines 

establish this priority if they do not require 

an individualized assessment of whether an 

individual with disabilities 

could benefit from the 

treatment, without 

consideration for whether 

a particular disability 

requires modification 

of the guideline’s 

application to have an 

equal opportunity for 

treatment, and absent 

any examination of 

whether and how implicit 

disability bias influences 

physicians’ clinical 

perceptions and policymakers’ understanding of 

efficient and fair decision-making. This last point 

has implications beyond the immediate topic of 

CSC guidance.

Implicit disability bias was the common factor 

in prepandemic healthcare discrimination to early 

pandemic CSC guidelines that devalued the lives of 

people with disabilities to 

later vaccine prioritizations 

that ignored how people 

with disabilities receiving 

HCBS and their caregivers 

were at high risk from 

the coronavirus. CSC 

guidelines were developed 

by experts from many fields who are subject to 

many kinds of disability bias. Many CSC guidelines 

recommend a triage panel to make treatment 

prioritization decisions with a required bioethicist 

on the panel to provide ethical counterweight to 

utilitarian concerns, but many bioethicists have 

utilitarian beliefs as well—that disabled lives are 

less valuable and, as such, it is ethical to devalue or 

even deny care when resources become scarce. 

Bioethicists are not immune from holding implicit 

biases of their own.

An examination of CSC 

guidelines developed 

or repurposed for the 

coronavirus pandemic 

makes clear that 

CSC drafters failed to 

understand the lived 

experience and goals of 

people with disabilities, 

especially those living 

in the community 

using HCBS; failed to 

understand the value 

and quality of life of people with disabilities; failed 

to acknowledge the myriad barriers and failures 

to accommodate that people with disabilities 

commonly encounter in the healthcare setting; and 

assumed that medical providers will do what is 

best for people with disabilities even when there 

is a growing body of research confirming that 

healthcare professions are 

rife with false assumptions 

about living with disability 

and uncomfortable with 

treating people with 

chronic conditions who 

cannot be “cured” or 

“fixed.”103

A recent study of physician attitudes toward 

people with disabilities, released in early 2021, 

captured the prepandemic views of more than 

700 U.S. physicians in active practice across the 

country.104 More than 80 percent self-reported 

Implicit disability bias was the 

common factor in prepandemic 

health care discrimination to 

early pandemic CSC guidelines 

that devalued the lives of people 

with disabilities to later vaccine 

prioritizations that ignored how 

people with disabilities receiving 

HCBS and their caregivers were at 

high risk from the coronavirus

More than 80 percent [of over 700 

U.S. physicians] self-reported th

belief that people with significant 

disabilities have a worse quality of 

life than nondisabled people

52 National Council on Disability
the belief that people with significant disabilities 

have a worse quality of life than nondisabled 

people. As the study’s authors point out, it 

would be difficult to imagine four out of five 

physicians freely stating that Black people have 

a worse quality of life than white people, though 

some might indicate that Black people face 

significant challenges in their life from things 

such as police violence or systemic racism in 

housing, employment, and other major areas. 

However, only about 18 percent of this same 

group “strongly agreed that the healthcare 

system often treats [disabled] patients unfairly.”105

Taken together, these two findings indicate that 

physicians base the 

perceived lack of quality 

of life for people with 

disabilities on the fact of 

the disability, not in how 

people with disabilities 

are treated when they 

seek healthcare. At 

the same time, “only 

40.7% of physicians 

were very confident 

about their ability to provide the same quality of 

care to patients with disability” and “just 56.5% 

strongly agreed that they welcomed patients 

with disability into their practices.”106 Interpreting 

these two figures together, it is clear that a 

minority of physicians do not feel fully confident 

in their ability to provide quality care to people 

with disabilities, and a small majority agree that 

they welcome patients with disabilities. This 

leaves about 16 percent of surveyed doctors 

who welcome patients with disabilities even 

though they are not very confident that they can 

provide those patients with the same quality of 

care that they give to nondisabled patients. This 

discrepancy leads again to the inference that at 

least some physicians attribute the challenge of 

providing quality care to people with disabilities 

to the fact of disability, not seeing it as a problem 

that is sourced in doctors or that physicians 

should address by improving their abilities to 

provide quality healthcare individually or as 

a group.

CSC guidelines, whether issued by states, 

health systems, or hospitals, all make the 

physician a key decision maker and, sometimes, 

the sole decisionmaker. Findings such as those 

described in the physicians’ attitudes study 

mean that people with disabilities are particularly 

disadvantaged by CSC 

guidelines that give 

physicians discretion for 

using and determining 

“severity” of condition, 

“quality of life,” and 

“healthy remaining 

years of life” to assess 

a patient’s treatment 

prioritization. These same 

problematic attitudes 

can be seen in how doctors talk about Do Not 

Resuscitate (DNR) orders with patients with 

disabilities and their families.

When approaching, or in, surge situations, 

some state CSC guidelines encourage doctors 

to ask their patients about DNR orders with 

the laudable goal of obtaining and honoring a 

patient’s informed choice to forgo ventilation 

or other means of invasive care under certain 

circumstances. In England, stories emerged of 

hospitals unilaterally placing DNR orders in the 

files of patients with intellectual disabilities.107 In 

the United States, there have also been media 

reports about physicians pressuring patients 

“[O]nly 40.7% of physicians were

very confident about their ability to 

provide the same quality of care to 

patients with disability” and “just 

56.5% strongly agreed that they

welcomed patients with disability 

into their practices.

The Impact of COVID-19 on People with Disabilities 53
and families to adopt DNR orders or rescind an 

existing POLST form that can express a patient’s 

wish for full resuscitation attempts.

For example, when Sarah McSweeney, a 

45-year-old woman with disabilities who lived in 

a group home in Oregon developed a high fever 

in April 2020, her support team and guardian 

brought her to the hospital and submitted her 

POLST form on her behalf.108 Tests showed that 

McSweeney did not have COVID-19, but she 

developed life-threatening aspiration pneumonia 

during her stay. At one 

point, two members 

of her support team 

were discussing the 

use of a ventilator with 

the lead doctor as the 

logical next treatment 

step when he surprised 

them and “pushed to 

rewrite McSweeney’s 

care document. He 

wanted a new order that 

would say the disabled 

woman should not be 

resuscitated or intubated. 

That would be an order 

to deny McSweeney 

the ventilator the doctor 

had just said she needed.” The nurse manager 

at her group home, Kimberly Conger, recalled 

that the lead doctor “said intubating her was a 

matter of risk versus quality of life . . . I was like, 

‘But she has quality of life.’ And he looked at me 

and goes, ‘Oh, she can walk? And talk?’”109 The 

doctor accompanied his words by scissoring 

his index and middle fingers in a simulation 

of walking. When the medical team looked at 

McSweeney, they saw a significantly disabled 

nonverbal woman who used a feeding tube 

and needed assistance with multiple activities 

of daily living. Her guardians and friends saw a 

lively young woman who loved country music, 

“girly” activities, making her friends laugh, and 

was actively taking steps to get a part-time 

job. This difference in views especially clashed 

around the issue of DNR; the hospital viewed 

intubation as an extraordinary measure that 

could do more harm than good, but McSweeney 

had been intubated before and spent time with 

good friends who used 

ventilators 24 hours a day 

and had tracheostomies. 

In the end, McSweeney 

died of aspiration 

pneumonia after her third 

week in the hospital. 

During her nearly three 

weeks in the hospital, 

“doctors and social 

workers had questioned 

why this disabled woman 

had medical instructions 

for full care, instead of 

a Do Not Resuscitate 

order. McSweeney’s 

advocates had pushed 

back. Says Conger of 

McSweeney’s care at the hospital: ‘I don’t feel 

like they—and this is my personal opinion—I feel 

like they didn’t feel like she was worth that.’”110

McSweeney and her guardians experienced 

explicit pressure to formally adopt a DNR. In the 

case of Michael Hickson, a 46-year-old Black man 

with quadriplegia and other disabilities who was 

hospitalized in Austin, Texas, in the summer of 

2020 with COVID-19, the hospital did not have 

to press for a DNR because the court-appointed 

When the medical team looked 

at McSweeney, they saw a 

significantly disabled nonverbal 

woman who used a feeding tube 

and needed assistance with multiple 

activities of daily living. Her

guardians and friends saw a lively 

young woman who loved country 

music, “girly” activities, making 

her friends laugh, and was actively 

taking steps to get a part-time job

This difference in views especially 

clashed around the issue of DNR 

54 National Council on Disability
guardian agreed to the treating doctor’s request 

to transfer Hickson from the ICU to palliative 

care. The treating doctor spoke to Mr. Hickson’s 

wife in a disturbing conversation that she 

recorded. He evoked Hickson’s quality of life, the 

fact that he did not walk or talk like others who 

had recovered after being placed on ventilators 

in the ICU, and the desire to make a “humane” 

decision for Mr. Hickson, but because Melissa 

Hickson was not her husband’s legal guardian, 

her objections did not prevent the hospital’s 

planned transfer of Mr. Hickson, who died after 

care and treatment were withdrawn.111

McSweeney and Hickson had family or 

support persons present. The pandemic context 

moves even further away from that situation as 

a norm as pointed out by Arthur Caplan, New 

York University’s chief ethicist.112 Typically, people 

go to hospitals for help and see doctors as an 

advocate for their care. People with disabilities, 

however, have met with implicit bias in the 

provision of urgent care that links the potential 

withdrawal/withholding of medical treatment as 

“futile” to questions on the quality of the life led 

by a person who is disabled.113 Even accepting 

the premise that under surge conditions normal 

standards of care must be adjusted, this does not 

automatically lead to the further step of burdening 

individuals with disabilities with not only fighting 

for their lives should COVID-19 or another health 

emergency arise during the pandemic, but 

with simultaneously having to fight for medical 

treatment and to prove to one’s own physicians 

that one’s existence is “worth living.”

According to Arthur Caplan, NYU’s chief 

medical ethicist:

We’re trying to go into not just who’s 

coming in the door and triaging, but what 

will we do if we can’t resuscitate. Do I care 

what your living will says in a pandemic? I 

probably don’t. I probably won’t even read 

it. I probably don’t even know where it is. 

Remember, many people are isolated in 

these units. Their loved ones may or may 

not be around to communicate something. 

It’s not business as usual. Rarely do we find 

living wills that get read to guide treatment 

in normal times. It’s usually your friends 

or family, your partner who speaks up and 

says, you know, they wanted everything or 

they didn’t. But if they’re in the hall far away 

and we don’t want them in the intensive 

care unit, or surrounded by coronavirus 

patients, that isn’t even going to happen.114

While most media coverage over the last year 

was on the development and actual use of state 

CSC guidelines, the situation where hospital 

administrators and staff know that they are rapidly 

approaching capacity but before a CSC policy is 

formally triggered and individual physicians are still 

in primary charge of their patients’ care options is 

equally fraught. In this situation of “contingency 

capacity” where the hospital’s resources are 

stretched but there is still some possibility of 

maintaining normal standards of care, disability 

implicit bias and stereotypes about disability are 

highly likely to influence care decisions as well 

as the advice providers give to patients and their 

families. The hospital that treated Michael Hickson 

did not have a triggered CSC even though he was 

admitted for COVID-19, leaving his doctor(s) free 

to decide whether to steer him toward a DNR 

order or hospice care instead of aggressive ICU 

treatment.115 In a convening held in furtherance 

of researching this report that included a range 

of adult and pediatric primary care and specialty 

The Impact of COVID-19 on People with Disabilities 55
providers, both physicians and nurses, participants 

agreed that there is systemic ableism within 

the healthcare system. Bias is baked into the 

curriculum in medical school where quality of 

life is a major focus and disabilities are viewed 

purely as “medical conditions” that decrease 

quality of life. The entire group, which included 

family members of people with disabilities as 

well as bioethicists, strongly endorsed the need 

for implicit bias training in the healthcare context 

that especially focuses on disability.116

Understanding and addressing disability 

discrimination in healthcare as a systemic issue 

will require investing 

in sustained action 

throughout the entire 

healthcare education, 

delivery, and funding 

system. A 2021 equity 

report and strategic plan 

by the American Medical 

Association appears to 

acknowledge this. The 

report focuses primarily 

on race and ethnicity, but 

also explicitly includes 

women, LGBTQ+ persons, and people with 

disabilities as groups that have “experienced a 

history of harm and discrimination in medical 

settings.”117 Within the report, there is a page 

that focuses on structural violence and people 

with disabilities that mentions state sterilization 

laws, federal civil rights laws, and key court cases 

for the disability community such as Holland v. 

Sacramento118 and Olmstead v. L.C.119 There is 

also the statement that an equity model that 

simply treats everyone the same “fails individual 

patients and communities. For example, highquality and safe care for a person with a disability 

does not translate to ‘equal’ care. A person with 

low vision receiving the ‘same’ care might receive 

documents that are illegible, depriving them of 

the ability to safely consent to and participate in 

their own treatment.”120 The American Medical 

Association’s report does not have cutting edge 

examples of ableism and, as a strategic plan, 

has been criticized for lacking bold commitments 

to inclusive changes in such specific areas as 

its prestigious research journals and boards, for 

example,121 but the clear inclusion of people with 

disabilities as a group that experiences redressable 

health and healthcare disparities signals an 

opening for change.

Physicians and other 

healthcare providers 

enter their fields 

presumably because 

they want to provide 

care, not triage it. But 

healthcare providers 

cannot develop 

nondiscriminatory 

CSC guidelines and 

administer them 

fairly unless they are 

supported in their ability to make nonbiased and 

nonableist treatment prioritizations when surge 

or contingency capacity is reached. Such support 

can run the gamut from encouraging ongoing 

professional education on what federal disability 

rights laws require in the healthcare context, a 

topic on which considerable ignorance appears 

to remain,122 to the active identification and 

dissemination of research that will inform 

clinical diagnosis and treatment of persons 

with disabilities during an emergency like the 

COVID-19 pandemic.123 Without interventions, 

such as training in disability cultural competency, 

Without interventions, such as 

training in disability cultural 

competency, health care providers 

will fall back on their own 

assumptions about the likely length 

and quality of life of people with 

disabilities, especially in conjunction 

with other factors such as age or 

race and income level

56 National Council on Disability
healthcare providers will fall back on their own 

assumptions about the likely length and quality 

of life of people with disabilities, especially in 

conjunction with other factors such as age or 

race and income level. As one qualitative study 

of close to 100 physicians found, “[w]hile most 

clinicians did not feel that they had been in the 

position of having to ration scarce resources, 

some nevertheless described practices, such 

as selection by age or comorbidity, that may 

be subject to implicit biases and may not be 

supported by societal priorities for fairness 

in resource allocation.” [Internal citations 

omitted.]124 This gap 

between physicians 

feeling like they are not 

engaged in medical 

rationing even as they 

engage in triage may 

be particularly relevant 

with emergency room 

specialists, who are 

expected to make rapid 

diagnostic and urgent 

care decisions, and 

who rarely have longerterm experience working with people who 

have disabilities and chronic conditions.

At the end of May 2021, the coronavirus 

appeared to be in retreat in the United States, 

and most signs indicated that both cases and 

death rates would continue to go down.125 The 

subjects of medical rationing and CSC guidelines 

seemed less urgent than they had been a 

few short months before, but the disability 

community and the nation must retain an 

ongoing concern on this topic. The underlying 

biases that made medical rationing and triage so 

dangerous for people with disabilities during the 

pandemic, and the potential for CSC polices to be 

applied in the future, will exist in any emergency 

whether caused by natural disasters, terrorist 

attack, or failings of critical infrastructure. Within 

the relatively short time period of the pandemic, 

there was an evolution of the language 

used in state CSC guidelines. Comparative 

research conducted on CSC guidelines across 

35 states found that “CSC plans revised later 

in the pandemic were more likely to align with 

disability rights priorities than those revised 

early in the pandemic or never revised. This 

pattern is consistent with growth over time in 

both the familiarity of 

state policymakers with 

disability rights concerns 

and the capacity of 

disability activists to 

influence public policy 

on a topic that quickly 

moved from obscurity to 

prominence.”126 Medical 

and legal authors are 

writing journal pieces 

that openly acknowledge 

the need for CSC 

guidelines to be assessed for compliance with 

antidiscrimination laws as well as broader goals 

of social justice.127 Advocates must be prepared 

to maintain momentum and repeat effective 

strategies for fighting discriminatory CSC 

guidelines now while also strategizing on what 

still needs to be done on a longer-term basis.

One helpful strategy pursued by state and 

national advocates was the coordinated effort 

to challenge discriminatory CSC guidelines by 

bringing administrative complaints with HHS OCR. 

HHS OCR was receptive to these complaints and 

early in 2020 bolstered disability advocacy efforts 

The underlying biases that made 

medical rationing and triage 

so dangerous for people with 

disabilities during the pandemic, 

and the potential for CSC polices to 

be applied in the future, will exist in 

any emergency whether caused by 

natural disasters, terrorist attack, or 

failings of critical infrastructure

The Impact of COVID-19 on People with Disabilities 57
by issuing nondiscrimination CSC guidance for 

healthcare entities in a civil rights bulletin,128 and 

working with individual states that had some 

of the most egregious CSC policies.129 HHS’ 

early resolutions with Alabama, Pennsylvania, 

Tennessee, and Utah,130 plus the ongoing work 

of disability advocates and community members 

to develop CSC principles, have prompted a 

number of states to incorporate explicit baseline 

protections for patients with disabilities who 

use personalized ventilators and/or require 

accommodations, and establish a framework of 

due process for medical rationing decisions. HHS 

OCR also worked with the state of North Carolina, 

the North Texas Mass Critical Care Guidelines Task 

Force, the Southwest Texas Regional Advisory 

Council, and the Indian 

Health Service 

to ensure that each 

entity’s CSC guidelines 

contain best practices for 

serving individuals 

with disabilities and 

older persons.131 In addition, some physicians, 

researchers, and bioethicists began to speak 

out and bolster the need for alternative best 

practices by questioning the accuracy and ethical 

assumptions behind common mortality prediction 

scores in existing CSC guidelines.132 Mainstream 

media support also pointed out the ethical 

and equitable shortcomings in medical triage 

approaches that, in practice, pushed people with 

disabilities and people from vulnerable populations 

to the back of the COVID-19 treatment line.133

While some of the worst and older state CSC 

guidelines are using much improved language 

that eliminates discriminatory references to 

categorical disability exclusions from ICU care 

and a requirement for a prognosis of long-term 

survival, disability advocates continue to meet 

continued resistance on CSC guidelines. Some 

states and many private healthcare entities fail 

to make their CSC guidance readily available to 

the public, and if the CSC guideline or policy is 

not known, it cannot be protested or potentially 

changed through advocacy. Not every CSC 

guideline includes a strong explicit commitment 

to nondiscrimination; nor does every guideline 

come with a clear set of due process instructions 

that would allow individuals and/or their families 

to question their prioritization for care or appeal 

the denial of care. The states and healthcare 

entities that work on CSCs need to proceed 

with less deference to “expertise” and more 

inclusion of people with disabilities in developing 

updated CSC guidelines 

for any situation where 

surge conditions might 

arise. And critically, all 

stakeholders need to 

find ways to effectively 

implement and enforce 

nondiscriminatory CSC guidelines in the urgent 

situations where people with disabilities face 

irreparable harm. For patients with disabilities 

who face the imminent potential for being taken 

off a ventilator or having their ICU admission 

delayed indefinitely, there are few or no viable 

options for immediate assistance, or at least, 

assistance to appeal or delay implementation 

of what could be a fatal decision. Finally, as a 

society we need a much greater understanding of 

how implicit biases are compounded in the case 

of specific individuals such as Michael Hickson 

who was both Black and disabled. Disability 

advocates, the federal government (e.g., HHS 

OCR), and ethicists who support the value of 

every life, must continue this work because even 

The allocation of health care 

resources needs to be based on 

living with a disability, not dying 

with a disability

58 National Council on Disability
when CSC guidelines are not triggered, their 

principles clearly influence the decisions that are 

made in “pre-surge” conditions, and the roots 

of medical rationing decisions lie in the same 

implicit bias that affected healthcare for people 

with disabilities long before the coronavirus came 

into existence.

Even if all states make their CSC guidelines 

nondiscriminatory, that may be only the 

substantial first step in protecting people 

with disabilities from medical rationing. State 

CSC guidelines are generally regarded as only 

guidelines. Individual hospitals and health 

systems may fail to formally adopt any CSC 

policy, and individuals with disabilities may make 

find themselves subject to policies that are not 

publicly available even if 

they exist, and that look 

very different from those 

developed in their state. 

In addition, public health 

and other state agencies 

that typically have 

authority over hospitals 

and health systems may lack the experience, 

legislative mandate, sufficient personnel, or the 

will to enforce disability and other civil rights 

laws in the arena of CSC, instead, treating 

medical rationing and triage decisions as purely 

medical decisions to be made by healthcare 

professionals. For the sake of every stakeholder, 

from patients with disabilities to doctors, from 

family members to medical educators, we 

must find ways to work together on developing 

nondiscriminatory standards of care, and to do 

so before we are actually in the midst of the next 

crises or emergency shortage. The allocation of 

healthcare resources needs to be based on living 

with a disability, not dying with a disability.

Visitation Policies and Other 

Healthcare Policy Modifications and 

Accommodations

People with a range of disabilities often develop a 

close and trusted relationship with their support 

person(s), who gain specific expertise in their 

employer, client, or family member’s physical, 

communicative, social, and emotional needs. 

The no-visitor policies adopted by hospitals, 

healthcare facilities, and ambulatory clinics/offices 

since the pandemic began have been challenging 

for primarily adult people with disabilities134 (most 

hospitals recognize an exception for minors 

that allows them to be accompanied by at least 

one adult for both inpatient and outpatient 

hospital procedures). Some professional provider 

associations such as the 

American Academy of 

Developmental Medicine 

and Dentistry also 

recognized the need and 

the capacity for no visitor 

policies to be modified.135

The American Academy 

of Developmental Medicine and Dentistry 

statement “recommended that hospitals provide 

reasonable accommodations in accord with the 

Americans with Disabilities Act in their visitor 

policies for persons who need support from 

known and acknowledged support persons” 

and recognized that “policies should permit a 

caregiver to be present to the greatest extent 

possible,” while also recognizing the hospital’s 

responsibility to develop appropriate infection 

control protocols for the presence of support 

persons.136

Throughout the pandemic, many healthcare 

facilities and plans seemed unclear on the 

critical point that civil rights laws apply during 

Throughout the pandemic, many 

health care facilities and plans 

seemed unclear on the critical point 

that civil rights laws apply during a 

public health emergency 

The Impact of COVID-19 on People with Disabilities 59
a public health emergency. As explained earlier 

in this chapter, healthcare entities have been 

subject to federal and state disability civil rights 

for decades. With the declaration of a public 

health emergency, however, many hospitals and 

urgent care systems seemed to assume that 

they could adopt blanket policies that would 

apply throughout the pandemic. Moreover, 

some hospitals did not publicly acknowledge 

any obligation to make individualized 

assessments of the needs of people with 

disabilities or to consider disability-related policy 

modifications or exceptions in care for people 

who contracted the virus. HHS OCR identified 

“[a]voiding separating people from their sources 

of support, such as service animals, durable 

medical equipment, caregivers, medication and 

supplies” as a practice needed to help ensure 

that people with disabilities have equal access 

to emergency services,137 and emphasized that 

“government officials, healthcare providers, 

and covered entities should not overlook their 

obligations under federal civil rights laws to 

help ensure all segments of the community 

are served.”138 As the following examples 

show, covered healthcare entities around the 

county have been slow to publicly acknowledge 

disability-based accommodations to their 

no-visitor policies, and even where policies 

exist, frontline hospital staff may not know or 

understand them or may implement them in 

overly narrow ways.

HHS OCR was directly involved in this issue 

after receiving several distinct complaints about 

hospital facilities denying the support persons 

needed by patients with disabilities. In May 2020, 

Disability Rights Connecticut and other disability 

rights groups filed a complaint with HHS OCR 

against a Connecticut hospital that refused to 

modify its no-visitor policy to allow the support 

person of a 73-year-old generally nonverbal 

patient with aphasia and severe short-term 

memory loss; the complainant’s support person 

provided assistance with communication and 

comprehension.139 Connecticut state was also 

included in the complaint because the state’s 

visitation guidance only recognized a narrow 

exception to no-visitation policies, limiting support 

person modifications to those “individuals with 

disabilities receiving certain services from the 

state Department of Developmental Services.”140

Individuals with very similar functional limitations 

to those with developmental disabilities were 

arbitrarily denied their support persons merely 

because their disabilities first manifested in 

adulthood or were the result of an accident, and 

therefore fell outside eligibility criteria under the 

state’s Department of Developmental Services 

funding stream.

Later in 2020, HHS OCR received three 

distinct complaints about MedStar Heath’s 

denial of a disability-related exemption to its 

no-visitor policy. MedStar Health operated 

health facilities that operated in more than 

100 locations throughout Maryland, Virginia, 

and Washington, D.C., including hospitals and 

urgent care centers. The three complainants had 

sought surgical or emergency care unrelated to 

COVID-19 but were confronted with the no-visitor 

policies that MedStar Health hospital facilities 

had adopted because of the coronavirus. Each 

of the complainants had physical disabilities and 

either cognitive or memory impairments, and 

two complainants also had hearing or vision 

loss. The complainants alleged that MedStar 

Health’s visitation policy denied them effective 

60 National Council on Disability
communication with their treating providers, 

denied them the ability to provide informed 

consent, and subjected them to physical and 

pharmacological restraints that would have 

been unnecessary if their support persons had 

been allowed.141

A close look at the complaint brought by 

Disability Rights D.C. and other disability 

organizations in September 2020 on behalf 

of William King142 shows numerous common 

discriminatory elements in the hospital visitation 

policies brought to HHS OCR’s attention:

These common elements of visitation 

policies that are not in compliance with 

disability civil rights obligations can be found 

in the Connecticut complaint and also in 

other visitation policies that were the subject 

of complaints brought from around the 

county.143 In a series of complaints filed with 

the California Department of Public Health 

(CDPH) in August 2020 against five separate 

hospitals across the state, encompassing four 

different health systems,144 family members 

and support persons detailed a trail of ignorance 

Discrimination in Hospital Visitation Policies

■ Narrowly or exclusively defining a subgroup of persons with disabilities (e.g., people with 

developmental disabilities or specific diagnoses) as patients who can receive an exception 

to the no-visitor policy;

■ Narrowly or exclusively defining who the hospital will accept as a support person (e.g., 

someone with legal decision-making authority over the patient, or a paid disability service 

provider) and limiting the disability-related functions that will be recognized as tasks that 

a support person undertakes (e.g., direct interpretation is recognized but recognizing and 

alleviating anxiety so effective communication can take place is not recognized), and/or 

limiting when and how a support person can be present;

■ Little emphasis on communicating policies and policy changes to frontline hospital 

staff, ultimately leaving discretion for the admittance of support persons in the hands of 

untrained staff who might not know exceptions to no-visitation even exist;

■ No clear obligation on the part of hospitals and urgent care facilities to make their policies 

and the disability-related exceptions to those policies publicly available on websites, 

physically displayed at entrances, or handed out upon hospital admission;

■ State departments of public healthcare that provided only advisory rather than mandatory 

guidance, did not mention civil rights or nondiscrimination obligations, and gave individual 

hospitals unfettered discretion to create individualized visitation policies without any 

consideration for elevating or appealing frontline decisions.

The Impact of COVID-19 on People with Disabilities 61
concerning the needs and rights of people with 

disabilities.145 One 68-year-old person with a 

disability was hospitalized for a week and her 

support person, her daughter, was excluded 

every night for 12 hours.146 As the complaints 

show, many hospitals disregarded CDPH’s 

statement that “‘recommends that one support 

person be allowed to be present with the patient 

when medically necessary,”147 or would interpret 

“medically necessary” in the narrowest possible 

way; frontline hospital staff were unfamiliar with 

and disregarded even their own hospital’s policy 

exceptions to a no-visitation rule.

When a needed 

support person is 

denied, the health 

and well-being of the 

person with a disability 

can quickly deteriorate, 

and the initial failure 

to accommodate will 

be compounded by 

an extended stay and 

a resulting increased 

risk of being subject 

to medical rationing 

if crisis standards of 

care are triggered or close to being triggered. 

Even when a support person is not a requested 

accommodation, people with various disabilities 

can need modifications in policy: someone 

with quadriplegia may need extra assistance 

during meals or frequent visits for repositioning 

because of existing pressure sores, someone 

who is developmentally disabled may require 

additional checks to ensure that intravenous 

and monitoring connections stay in place, 

and someone with limited vision may need 

initial assistance using unfamiliar technology 

for online visitation. A person with mobility 

disabilities needs an accessible toilet and may 

need assistance with any needed transfers. 

A failure to meet these needs is not only likely 

to result in unequal care, it can lead over time 

to complications and worsening health that 

then also raise the threat of medical rationing 

during surge or near-surge conditions. This is 

why a common lack of accommodations, policy 

modifications, and individualized care assistance 

related to disability needs can lead directly to 

patient concerns about staying in a hospital. 

As one well-known disability researcher and 

doctor who is a person 

with disabilities herself 

has noted:

Each of us makes 

choices about the care 

that is confronting us, 

and especially at the 

height of the COVID 

crisis, it would have 

been rational for a 

person with disabilities 

to decide to remain at 

home and receive care 

at home—even if it ultimately resulted in 

their death. We didn’t understand the virus 

well back then.148

Policymaking that did not consider the need 

for disability modification of pandemic-motivated 

policies or individualized assessment of the 

healthcare needs of individuals with disabilities 

led to discriminatory CSC, and also prompted 

hospitals to adopt strict “no-visitor” policies as 

an infection control measure without considering 

the need for exceptions. A central part of the 

When a needed support person is 

denied, the health and well-being 

of the person with a disability can 

quickly deteriorate, and the initial 

failure to accommodate will be 

compounded by an extended stay 

and a resulting increased risk of 

being subject to medical rationing 

if crisis standards of care are 

triggered 

62 National Council on Disability
problem is that there was already a preexisting 

assumption by many physicians and the general 

public that when a person with a disability goes 

to the hospital, hospital staff will be equipped to 

meet all of their healthcare–related needs. During 

the pandemic, this assumption shortchanged 

both support persons’ expertise and hospital staff, 

who during the best of times may not have the 

training or capacity to meet the assistance needs 

of multiple significantly disabled adults, much 

less during a pandemic. A majority of healthcare 

providers working in hospitals, and especially 

those in emergency rooms and intensive 

care units, focus on urgent care. They are not 

necessarily trained to recognize how people with 

intellectual or developmental disabilities may 

not give straightforward answers to questions 

about their pain levels, or how people who use 

personal ventilators will deteriorate mentally 

and physically without their ventilators, or how 

preexisting disabilities or conditions, including 

mental health medications, may require 

additional assistance during a hospital stay. One 

professor of nursing has agreed that visitation 

has become an ethical dilemma for nurses, 

who “are often disadvantaged, forced to act 

as ‘gatekeepers’ without sufficient direction or 

training on disability-related exceptions to general 

policy, and expected to deal with additional care 

requirements when someone with significant 

disabilities is admitted without the experienced 

support person who would willingly perform 

many of these care functions.” By refusing to 

admit support persons or provide other needed 

policy modifications during a pandemic or 

similar health crisis, hospitals hurt people with 

disabilities as well as the very staff who would 

benefit most from having support persons 

on site.

It is difficult to conceive of any public health 

emergency, natural disaster, hostile act, or 

infrastructure failing that would not place a 

significant strain on the health system in the 

affected geographic area. Once that occurs, it 

is entirely foreseeable that healthcare providers 

and administrators will deny needed policy 

modifications and accommodations because 

they will assume that emergency conditions 

dictate common rules for every patient, 

without exception. But disability-based policy 

modifications are required in healthcare under 

federal and many state laws. Those laws are not 

neutralized or diminished in an emergency, as 

this chapter has repeatedly stressed.

Accessible Vaccination and 

Vaccination Prioritization

The first Emergency Use Authorization (EUA) 

for a coronavirus vaccine in the United States 

was granted for individuals aged 16 years and 

older on December 11, 2020.149 The second EUA 

followed one week later for individuals aged 

18 years and older.150 The third vaccine, which 

required only a single shot rather than two 

spaced weeks apart and did not need storage 

at ultra-cold temperatures, was approved at the 

end of February 2021, again for individuals aged 

18 years and older.151 And on May 10, 2021, the 

EUA granted for the first vaccine was expanded 

to include persons aged 12 to 15 years old,152

while both the first and second EUA grantees 

applied May 7 and June 1, respectively, for full 

use authorization and not just EUA status.153

Even though the full authorization process is 

likely to take months, the applications showed 

the developers’ confidence in their product. Full 

authorization allows each developer to market its 

vaccine directly to consumers and reassure those 

The Impact of COVID-19 on People with Disabilities 63
with vaccine hesitancy because of concerns 

that the vaccines were insufficiently tested in 

a rushed process.

Vaccination was described by federal 

administration and state governors as the light 

at the end of COVID-19’s long dark tunnel. 

Vaccination helped the nation reach a crucial 

turning point of both falling case and death 

rates154 and economic recovery,155 though not 

all of these positive changes happened evenly 

across all states.156 Vaccination itself can be a 

divisive subject, but monthly polling showed 

that even though the percentages of the public 

who said they will definitely not get the vaccine 

or will only get vaccinated if required to do so 

stayed consistent for months at approximately 

13 percent and 7 percent respectively, the 

percentage of the public who received shots 

steadily increased, reaching 62 percent in May 

2021 with only 4 percent indicating they had 

not yet been vaccinated but would like to be as 

soon as possible.157 The proportion of people who 

said they would “wait and see” if they would 

get vaccinated steadily dropped from 22 percent 

in January 2021 to 12 percent in May 2021.158

By August 2021, about 52 percent of U.S. 

residents were fully vaccinated.159 Nonetheless, 

the vaccine success story should not obscure 

the fact that the same preexisting foundational 

problems that made PPE and COVID-19 testing 

so hard to get for those needing or providing 

HCBS, made medical rationing fearful, and made 

the denial of needed policy modifications so 

common for people with disabilities, also plagued 

the equitable and accessible inclusion of people 

with disabilities in COVID-19 vaccine distribution 

across the country.

Generally speaking, the groundwork for 

vaccination can be placed into three overlapping 

categories of work that had to be done before 

any shot was given: outreach, prioritization of 

population groups (assuming at least some 

period[s] during which demand outstrips supply) 

and establishing the mechanics of eligibility 

sign-up and delivery. The needs of people with 

disabilities must be considered in all these 

categories or many will be left out. Equitable 

outreach and education efforts focused on 

race and ethnicity, as is appropriate, but they 

also had to consider effective communication 

requirements and the need to reach and 

reassure groups, such as Deaf persons, who 

may be experiencing vaccine hesitancy because 

breaking public health news is full of technical 

jargon and often only available through errorprone automatic captioning,160 or they are 

reluctant to place themselves in situations 

where they are unsure that full communication 

access will be provided.161 In Rochester, New 

York, which has one of the largest per capita 

communities of Deaf persons in the world, 

the full communication access provided to 

refugees who are Deaf and seeking vaccination 

exemplified how effective communication 

was integral to both equitable vaccination 

and achieving public health goals.162 Vaccine 

information and outreach written in plain 

language benefits Limited English–speaking 

populations, persons with intellectual or 

developmental disabilities, and people with 

lower literacy levels.

In the category of vaccine sign-up and 

delivery, there were numerous reports across 

the country of inaccessible online registration 

forms, physically inaccessible vaccination sites, 

lack of ASL interpreters and alternative formats, 

and the failure of vaccine personnel to recognize 

direct care workers and unpaid support persons 

64 National Council on Disability
as frontline healthcare workers.163 Both HHS 

OCR and ACL made attempts to address some 

of these barriers by developing legal guidance 

on how vaccine providers needed to ensure 

that people with disabilities had equal access 

to vaccine processes164 and on best practices 

and strategies for providing that access on 

the ground.165 Another key accessibility factor 

was having sufficiently reliable internet access 

to reach vaccination sites. Analysis of 2019 

American Community Survey data established 

that people with disabilities, older persons, and 

people of color had lacked internet access in 

higher proportions.166

The two categories of outreach and vaccine 

delivery also affected other populations that 

include and/or directly intersect with the wellbeing of people with disabilities. For example, 

states were not equally effective in early efforts 

to proactively target outreach and vaccination 

to low-income counties with racial and ethnic 

groups that had multiple social vulnerability 

indicators; Arizona and Montana were notably 

successful, while California ran into problems 

of misuse when special vaccination codes 

intended for communities of color circulated 

among wealthier nonresidents.167 A majority of 

direct care workers are low-income women of 

color, as explained in chapter three, and vaccine 

hesitancy deeply influenced uptake of the 

COVID-19 vaccines among healthcare workers—

those who put off the vaccine comprised at least 

40% of healthcare workers at some historical 

points and was most prevalent among lesserpaid healthcare workers of color.168 Some states, 

such as Virginia and Missouri appeared to have 

reached Latino populations effectively, but 

nationally “a dearth of transportation options, an 

inability to take off from work to get a vaccine, 

and concerns about documentation and privacy 

dampened uptake among Hispanics, according 

to experts.”169 These same accessibility barriers 

concerned organizations such as the National 

Medical Association and other Black healthcare 

professionals, who emphasized that “the fear 

of Covid-19, which is this invisible looming foe, 

that fear does not always outweigh the very 

clear and well-documented danger of going to a 

system that has proven itself to be as deadly as 

disease,” and pointed to “the forced sterilization 

of poor, disabled, and Black women through 

much of the 20th century as just one of many 

examples.”170 People with disabilities were 

therefore disadvantaged by vaccination barriers 

they encountered themselves, as well as barriers 

that lowered vaccination rates among current 

and potential direct care workers who provide 

necessary personal assistance.

As problematic as vaccine outreach and 

delivery have been for people with disabilities, 

however, the most revealing systemic difficulties 

occurred in the category of vaccine prioritization. 

Given multiple reports emerging in 2020 on the 

unequal impact of the coronavirus on racial and 

ethnic population groups in particular, the federal 

government took steps to address the potential 

inequalities in how COVID-19 vaccines would be 

distributed once approved. In the late summer 

of 2020, the National Institutes of Health and 

CDC asked the National Academies of Science, 

Engineering, and Medicine (NASEM) to form 

a committee of experts who would create a 

consensus statement on how to equitably 

allocate COVID-19 vaccines. Vaccine supply 

would almost certainly be less than demand, 

both domestically and globally, for a period likely 

to be months or even years for some poorer 

countries. The committee, largely made up of 

The Impact of COVID-19 on People with Disabilities 65
individuals with medical, scientific, bioethics, or 

legal expertise, was asked to:

consider what criteria should be used to set 

priorities for equitable distribution among 

groups of potential vaccine recipients, 

considering factors such as population 

health disparities; individuals at higher risk 

because of health status, occupation, or 

living conditions; and geographic distribution 

of active virus spread. In addition, the 

committee will consider how communities 

of color can be assured access to COVID-19 

vaccines in the U.S. and recommend 

strategies to mitigate vaccine hesitancy 

among the American public.171

The NASEM committee’s equitable framework 

for vaccination gave limited recognition to 

disability as a factor in prioritization, and it 

failed to recognize people with disabilities as a 

group subject to identifiable risks of coronavirus 

infection and severe COVID-19 illness. Instead, 

the committee paid almost exclusive attention 

to age and medical factors and failed to grapple 

with multiple high-risk factors that affect people 

with disabilities, such as reliance on HCBS, living 

in smaller CCFs such as group homes whatever 

one’s age, the historical and ongoing impact 

of being a health disparity population, and the 

existence of discriminatory CSC that would ration 

people with various significant disabilities out of 

COVID-19 treatment in surge conditions.172 People 

with disabilities were not specifically consulted 

or asked about the unavoidable risks of infection 

and severe consequences from COVID-19 

that they live with because of disability-related 

needs. The final framework noted the risks of 

infection experienced by people with disabilities 

who could not forego or socially distance from 

their direct care workers, but the committee’s 

prioritization recommendation pointed only to 

CDC’s then-current listing of comorbid conditions 

associated with increased risk of severe illness 

or death from COVID-19: cancer, chronic kidney 

disease, chronic obstructive pulmonary disease, 

immunocompromised state from solid organ 

transplant, obesity (body mass index ≥30), 

serious heart conditions (e.g., heart failure, 

coronary artery disease, cardiomyopathies), 

sickle cell disease, and type 2 diabetes 

mellitus. Recognizing the limited initial vaccine 

supply, Phase 1c proposed setting a priority on 

individuals with two or more of these conditions, 

recognizing that these priorities could be refined 

as better evidence emerges.173

CDC’s list of conditions, not intended to be 

used as a way to distinguish between people 

with disabilities who were or were not at high 

risk from COVID-19, was not a particularly timely 

or efficient way of keeping up with emerging 

evidence about comorbid conditions.174 At 

the simplest, comorbid conditions are two or 

more conditions or diseases that exist at the 

same time in a person. Scientists researched 

comorbid conditions in those individuals 

who were infected with the coronavirus or 

who were hospitalized or died most often 

from COVID-19. Researchers could then 

make reasoned conclusions about whether 

people with certain health conditions were at 

higher risk of becoming seriously ill or dying 

from COVID-19 if they were exposed to the 

coronavirus.175 The idea that national or state 

guidance on vaccinations would equitably 

include people with disabilities by consistently 

and constantly incorporating the very latest 

scientific investigations into what constitutes 

66 National Council on Disability
a comorbid condition, in the middle of a 

pandemic, was flawed to begin with. Medical 

researchers gravitated toward more common 

conditions among the general population 

such as type 2 diabetes or chronic obstructive 

pulmonary disease, tended to focus on specific 

diagnostic conditions rather than the functional 

impairments that reveal more about disability 

status and healthcare needs, and relied on 

death certificate information that incompletely 

captures a deceased person’s health conditions. 

Scientists and institutions conducting research 

also tended to overlook persons with rarer 

health conditions 

because it is harder to 

find enough subjects 

to make statistically 

significant findings.176

Nonetheless, as 

NCD highlighted in its 

February 2021 letter to 

the National Governors’ 

Association, the NASEM 

equitable vaccination 

framework as well as 

the federal Advisory 

Committee for Immunization Practices (ACIP) 

Updated Interim Recommendations for Allocation 

of COVID-19 Vaccine177 explicitly included at 

least some people with disabilities in their 

recommendations and did not impose additional 

arbitrary age divisions on those with high-risk 

medical conditions. Each recommendation 

“proposed persons of all ages with comorbid 

and underlying conditions that put them at 

significantly higher risk be included in Phase 1b 

or Phase 1c.”178 But the NASEM framework was 

purely a model. Even ACIP’s recommendations 

to CDC on who should get vaccinated and when 

only served as “guidance” for states. Most states 

adopted ACIP’s 1a prioritization of healthcare 

personnel and residents of LTCFs, but as time 

progressed, states increasingly established 

their own prioritizations with varying degrees of 

specificity.

The degree of specificity in a state’s vaccine 

priorities can and did become a barrier in and 

of itself. Washington, D.C., and Ohio indicated 

by January 11, 2021, that inpatient psychiatric 

patients should be included in phase 1a as 

residents of LTCFs,179 but in states that were 

unclear on this point, psychiatric patients could 

be completely overlooked 

or only included in 

the event that some 

advocate at the facility 

had connections with a 

state or federal vaccine 

provider. On the other 

hand, some states were 

narrowly specific in 

ways that could result 

in prioritized individuals 

being turned away. For 

example:

■ Massachusetts included “home-based 

healthcare workers, including: Personal 

Care Attendants (PCAs) and Home-Based 

Respite and Individual/Family Support staff 

(DDS and DDS Self Directed)” among its 1a 

category of healthcare workers, but Illinois 

stated that “those providing “Home Health” 

or serving as a “Home Aide/Caregiver” for 

a relative with a disability include those 

who care for people with any of . . . : 

Cerebral Palsy, Down Syndrome, Epilepsy, 

Specialized healthcare needs, including 

The idea that national or state 

guidance on vaccinations would 

equitably include people with 

disabilities by consistently and 

constantly incorporating the very 

latest scientific investigations 

into what constitutes a comorbid 

condition, in the middle of a 

pandemic, was flawed to begin with

The Impact of COVID-19 on People with Disabilities 67
dependence upon ventilators, oxygen, 

and other technology.”180 Even though 

the Illinois priority list indicated its list of 

stated conditions was not exhaustive, a list 

makes it that much harder for caregivers 

of individuals with disabilities that are 

not specified on the list to establish their 

prioritization.

■ Maryland and Ohio included people with 

developmental disabilities in its phase 

1b, a deliberate and explicit inclusion that 

necessarily excludes people with other 

disabilities from vaccination unless they 

happen to be institutionalized or over 75 years 

old and fit into the age prioritization.181

■ Florida appeared to broadly include 

people deemed 

to be “extremely 

vulnerable to 

COVID-19” in 

phase 1a but the 

determination had 

to be made by a hospital physician using a 

specific form.182

■ Pennsylvania was one of the few states to 

explicitly and early mention people receiving 

HCBS and include them in phase 1b.183

Once Phase 1a was underway, some states 

such as California, Colorado, Kentucky, Montana, 

New Hampshire, New Jersey, New Mexico, 

and Ohio quickly pivoted in early January to an 

age-based framework that included age limits as 

young as 50 years in phase 1c. However, only 

some of these same states, such as Montana, 

New Hampshire, New Mexico, and Oklahoma 

also included people 16 years and older with highrisk medical conditions in phase 1b. Montana 

went so far in phase 1c as to include people 

16 years and older with medical conditions that 

were not included in phase 1b. Even among 

these four states, however, one state required 

people to have two or more underlying health 

conditions while the other three states explicitly 

or implicitly required only one condition. States 

also changed their own prioritizations over time, 

especially in the first weeks of 2021. New Jersey, 

for example, did not include people with high-risk 

medical conditions on January 11 but by January 

19 included persons 16–64 years with high-risk 

medical conditions in phase 1b.184 By March 9, 

the situation had reshuffled with at least thirtyseven states including at least some residents 

with high-risk conditions in their vaccine 

prioritization, but “the health issues granted 

higher priority differ from 

state to state, and even 

county to county.”185

In marked contrast, 

California moved to a 

primarily age-based 

framework in January, placing people aged 65–74 

years in phase 1b and those aged 50–64 in phase 

1c. Phase 1b also included essential workers, 

defined in terms of agriculture/food services, 

education/childcare, and emergency services.186

The above review of vaccination among states 

through the first months of 2021 reveals that 

vaccine prioritization was the “Wild West” of 

COVID-19. States talked about equity and tried 

to achieve speed, but a great deal of vaccination 

procedures on the ground were determined 

by local public health authorities and vaccine 

providers who seemed to have default discretion 

to interpret state rules that could change weekly. 

The needs of people with disabilities and older 

individuals, especially those who could not leave 

... [T]he first months of 20

reveals that vaccine prioritization 

was the “Wild West” of COVID-19

68 National Council on Disability
their homes for vaccination, were partially met 

if there happened to be a strong local advocate, 

a healthcare decision maker, or even just a 

single provider who saw the need,187 but heroic 

individual efforts should not have been required 

and cannot redeem systemic failures. The degree 

of seemingly arbitrary variance in how people with 

disabilities as a population group were treated 

when it came to COVID-19 vaccination cannot 

be overstated. Such treatment, coming after 

people with disabilities were seemingly left to die 

in nursing homes and subject to discrimination 

under some CSCs, left members of the disability 

community fearful that governments and public 

health authorities simply didn’t care if some of 

them died during the pandemic.188 It is foreseeable 

that in a free-for-all environment, people with 

disabilities will get pushed to the back of the line 

virtually every time, with their rights obscured and 

forced to be dependent upon charity.

California is a case study in how people with 

disabilities and high-risk conditions had to battle 

to be included in the state’s vaccine prioritization, 

irrespective of a public commitment to equity 

in the vaccination process. The state had 

established a “Community Vaccination Advisory 

Committee” (CVAC) in November 2020 with 

nearly 80 advocates and representatives from 

racial, ethnic, and underserved communities, 

with the state goal of ensuring that COVID-19 

vaccines would be distributed equitably, and 

the hope of avoiding exacerbation of existing 

health and healthcare disparities.189 The CVAC 

met frequently and tried to achieve consensus 

results on the population groups that would be 

prioritized once vaccination began. However, 

demand far outweighed supply for many weeks 

and as reports of a slow vaccination pace and 

unused spoiled doses spread across the state, 

California moved away from nuanced attempts 

to balance exposure, infection, and death 

risks among California communities. The state 

instead adopted age as a prioritization factor 

that is logistically easy to administer and widely 

acknowledged as a strong risk factor for dying 

from COVID-19.190 A few CVAC members worked 

together bringing original data verifying how 

younger Medicaid-enrolled people who require 

HCBS usually have a range of health conditions 

and are at high risk of infection, hospitalization, 

and death from COVID-19.191 These members 

also circulated breaking studies and information 

to the CVAC on how COVID-19 placed people 

with various disabilities at higher risk, such 

as those with intellectual and developmental 

disabilities,192 people with schizophrenia,193 and 

those for whom other countries gathered data.194

Mainstream state and national media also played 

a useful role by reporting on rates of coronavirus 

infection and death from COVID-19 among 

people with specific disabilities195 and providing 

a forum for younger people with disabilities to 

express their personal concerns on vaccination 

and the impact of COVID.196

In the end, younger people with high-risk 

disabilities or conditions were not included 

in phase 1b or 1c until February 12, 2021, at 

which time CDPH issued a bulletin to vaccine 

providers advising them that people with highrisk conditions or disabilities would be eligible for 

vaccination as of March 15.197 High-risk conditions 

were defined primarily through CDC’s finite 

list of health conditions, but high-risk disability 

encompassed circumstances in which:

■ an individual is likely to develop severe lifethreatening illness or death from COVID-19 

infection;

The Impact of COVID-19 on People with Disabilities 69
■ acquiring COVID-19 limits the individual’s 

ability to receive ongoing care or services 

vital to their well-being and survival; or

■ providing adequate and timely COVID-19 

care will be particularly challenging as a 

result of the individual’s disability.198

The more open-ended nature of high-risk 

disability was a victory for California’s disability 

community.199 California was experiencing nearsurge conditions at the end of 2020 through 

the first few months of 2021, making this 

period a particularly anxious time, and once 

people with high-risk conditions and disabilities 

were included within California’s vaccine 

priority populations, state representatives 

and disability advocates had to consider how 

vaccine providers could confirm that individuals 

belonged within this group. If the verification 

process called for “a doctor’s note,” people with 

disabilities and advocates were concerned that 

the requirement would become yet another 

barrier to low-income people of color who were 

disproportionately less likely to have a regular 

healthcare provider who could write such a 

note, and primary care doctors did not always 

know when their patients received HCBS or 

understand its significance for coronavirus 

infection.200 In the end, CPHD agreed that 

people with high-risk medical conditions and 

disabilities could self-attest to that fact to 

establish their vaccination priority.201

Now that the United States has reached 

a point where supply seems to match or 

even outstrip remaining demand in at least 

some parts of the country, it is easy to look 

back and characterize the inaccessibility and 

uneven treatment of people with disabilities 

in vaccination as just one of many flawed 

government responses during an emergency. 

But vaccine problems persisted for some 

people with disabilities as states reopened and 

vaccination totals are celebrated. Individuals 

with disabilities who had difficulty leaving their 

homes remained unvaccinated months after 

they were first eligible because of their age or 

having a high-risk condition/disability.202 There 

was a sharp contrast between states like Ohio, 

New York, and Colorado initiating vaccination 

lotteries with large cash prizes to incentivize 

vaccination among those who remain hesitant203

even as unvaccinated people filled COVID-19 

wards in Cleveland, New York City, and Denver, 

including people who were unable to get 

vaccinated because “[c]ities and states have 

slowly been rolling out programs to reach some 

of the nation’s estimated 4 million homebound 

Americans, but the programs tend to have 

modest goals and target only a fraction of the 

people who likely need outreach.”204

When states, local governments, and public 

health authorities made decisions in or after 

May to use narrow definitions of “homebound” 

to gatekeep the house call vaccination 

process and consequently missed people 

with disabilities who face multiple barriers to 

leaving their homes,205 they were not deciding 

something in the heat of an emergency. They 

were making deliberate decisions about where 

to expend resources and who is worthy of 

those resources. Even as states fully reopened 

their economies and modified social distance 

and mask rules, persons with disabilities of all 

ages who still could not get vaccinated were 

left to weather a profound social isolation that 

is even longer than the period of isolation 

that nursing home and congregate residents 

had to endure when they quarantined in their 

70 National Council on Disability
own rooms. Ironically, institutional residents 

were told that they could not be placed into 

alternative housing because they would be 

lonely, while nursing home residents and their 

families were told they had to endure loneliness 

to remain healthy. But as poignantly observed 

by the adult daughter of a memory care facility 

resident, “Is physical health so important that 

we deny social isolation as potentially furthering 

illness and death?”206 Six months after the first 

vaccine was authorized, we had unvaccinated 

people with disabilities who fought to remain in 

the community who had to continue curtailing 

visitors, maintaining social distance, and 

enduring anxiety when 

they received personal 

support services or 

other medical services 

in their homes. Their 

deprioritization for 

COVID-19 vaccination 

was also a choice of 

sorts, but one that was 

imposed upon them 

rather than a decision 

they got to make.

The common thread that ran from inadequate 

PPE to discriminatory medical rationing of 

COVID-19 treatment to failing to be accounted 

for in vaccination schemes is rooted in how 

many levels of public health and emergency 

decision makers fail to recognize the lives 

of people with disabilities, and particularly 

those with significant disabilities living in the 

community. The failure to collect relevant 

health data on those lives—where people with 

disabilities live, where they get healthcare, how 

they are or are not accommodated, the health 

and healthcare disparities that they experience, 

the intersection of disability characteristics 

with racial, ethnic, LGBTQ+ and other personal 

characteristics—constitutes ignorance that was 

systemic, and at this point in history, willful. This 

idea will be addressed more fully in the following 

section.

Even though several states were approaching 

70 percent vaccination rates of adults 16 and 

over, vaccination-related issues continued to be 

relevant for some time for a number of reasons. 

These reasons include the fact that experts could 

not pin down exactly when herd immunity will 

be achieved in the United States, vaccination 

rates remained uneven across states and 

identifiable population 

groups, COVID-19 

variants continued to 

evolve and spread across 

the globe, vaccine use 

was not yet granted for 

children 12 years and 

under, and there was 

still much discussion 

and uncertainty around 

how proof of vaccination 

would play out in such 

contexts as employment, travel, and attendance 

at mass events held in music or sports venues. 

So many of the problems outlined throughout 

this chapter occurred because governments, 

public health entities, and healthcare providers 

failed to take account of the disparate needs 

of all persons when planning and executing 

pandemic and emergency response measures. 

The cycle of insufficient data, inadequate 

accommodations and modifications, untrained 

frontline responders, and implicit bias cannot be 

left to trap people with disabilities in an endless 

loop of actions that come “too little, too late.”

The cycle of insufficient data, 

inadequate accommodations and 

modifications, untrained frontline 

responders, and implicit bias 

cannot be left to trap people with 

disabilities in an endless loop 

of actions that come “too little, 

too late.

The Impact of COVID-19 on People with Disabilities 71
COVID-19 Data Collection—Infection, 

Hospitalization, Treatment, and Death 

Rates of People with Disabilities, 

Collected in Conjunction with Race, 

Ethnicity, Age, and Other Demographic 

Characteristics

The dearth of disability-specific COVID-19 

information has left the nation uncertain of such 

basic figures as how many COVID-19–related 

deaths of people with disabilities occurred in 

the United States and where they occurred; 

the number of people with disabilities younger 

than 65 who died in long-term care and other 

congregate settings; the functional disabilities 

among those who have been infected with the 

coronavirus and those who received treatment 

in hospitals; and how many people with 

disabilities were vaccinated to date.

Without this data, it is challenging to make 

tailored legal and policy recommendations to 

reduce disparities in COVID-19 testing, receipt of 

treatment, and vaccination among people with 

disabilities because it is difficult to even establish 

that disparities exist. It is also almost impossible to 

make a cross-analysis of how disability intersects 

with age, race, ethnicity, income levels, LGBTQ+ 

status, and other personal characteristics.

When disability advocates and communities 

sought vaccination prioritization for younger 

people with disabilities, they were confronting 

a complex application of disability rights. 

People with disabilities can clearly evoke 

disability rights laws when they face physically 

or programmatically inaccessible vaccination 

locations, for example, or if they are explicitly 

excluded from vaccination because they are 

disabled. In such cases, they face targeted 

barriers that prevent their equal access to 

vaccines to which they would otherwise have 

the same right as everyone else. It is a less 

straightforward argument to say that people 

with disabilities are being discriminated against 

when a state establishes vaccination priorities 

that give higher priority to groups of individuals 

on the basis of a characteristic other than 

disability, for example age. Infection and death 

rates have established that the coronavirus is 

having a greatly disproportionate impact on older 

individuals. If people with disabilities who also fit 

the age criteria are being vaccinated, it is difficult 

to establish that younger people with disabilities 

are actively discriminated against just because 

disability in and of itself is not being prioritized 

above age. Similarly, a state’s prioritization of 

other equity or social factors such as emphasizing 

frontline healthcare workers or essential workers 

is difficult to impugn as inherently discriminatory. 

Arguably, a governing entity is free to prioritize 

saving older lives that are disproportionately at 

risk or people working in occupations that are 

particularly needed for maintaining population 

health and infrastructure. If advocates could 

establish similarly high rates of risk of infection, 

severe illness, and death from the coronavirus 

for younger people with disabilities to those cited 

for older persons, but the state nonetheless 

refused to prioritize on the basis of disability, 

then the presence of discrimination becomes 

more probable.

Ultimately, the country must achieve finely 

detailed or “granular” collection of health data 

on people with disabilities because it cannot 

achieve equitable well-being in healthcare and 

public health for people with disabilities without 

it. The U.S. government must recognize the 

need for the data, information collection must be 

mandated, and a variety of health entities must 

agree to develop and use validated methods 

72 National Council on Disability
for collecting data both at the point at which a 

service such as hospitalization or vaccination is 

administered and through the use of national 

surveys such as the American Community 

Survey or the Behavioral Risk Factor Surveillance 

System (BRFSS). Though the surveys are national 

some are administered by and through states. 

The BRFSS, for example, has “a standardized 

core questionnaire, optional modules, and 

state-added questions” and is administered by 

state health departments through telephone 

surveys using random digit dialing to landlines 

and cell phones; the BRFSS is administered 

throughout the year and is particularly important 

for detecting trends that can point to emerging 

illnesses such as COVID-19.207 The ACS, on the 

other hand, is conducted directly by the U.S. 

Census Bureau through paper or online surveys 

sent out randomly every month to addresses in 

any of the 50 states, the District of Columbia, 

and Puerto Rico in five-year cycles, and “provides 

information about the social and economic needs 

of your community every year.”208 It is particularly 

important in helping all levels of government to 

plan spending and infrastructure for educational, 

housing, healthcare, transportation, and other 

needs in American communities.

Disability data collection efforts and 

standardization in healthcare and in programs and 

activities conducted or sponsored by federal HHS 

were not broadly required until Section 4302 of 

the ACA was enacted in 2010.209 An interagency 

committee had developed a six-item set of 

functional disability questions that had undergone 

extensive cognitive and field testing and was 

being used in the ACS and some other major 

national surveys, but it had not been officially 

adopted as a minimum standard or uniformly 

required by HHS;210 but the Section 4302 mandate 

covers only national population-based surveys 

and does not extend to “administrative data (such 

as data captured at the time of enrollment in a 

program or data collected from a medical record), 

clinical data (collected as part of clinical care), 

and research data (collected from participants 

in research studies)” that would allow analysis 

of disparities in the public health inclusion of 

people with disabilities.211 The adequacy of 

inclusion of people with disabilities in state 

health surveillance, public health, and emergency 

measures is also not captured. There has not 

been any attempt to extend Section 4302’s 

minimum data standards to private entities, even 

to entities that receive federal financial assistance 

through their participation in federal and state 

insurance exchanges, for example.

For the most part, private health providers and 

insurers treat diagnostic information as disability 

information. This tends to obscure functional 

disability status because someone with a diagnosis 

of multiple sclerosis, for example, can have a range 

of symptoms from nonvisible fatigue to loss of 

mobility requiring use of a wheelchair; a diagnosis 

in itself fails to reveal a patient’s accommodation 

needs or their likelihood of experiencing disabilityrelated healthcare disparities. Nonetheless, private 

health insurance claims data helped to establish 

how persons with certain health conditions 

were at high risk of severe consequences after 

contracting COVID-19212 and could be even more 

helpful if claims data included demographic data 

from the ACS disability set.

Given the current limited state of granular 

disability health data collection, it is useful to 

trace how granular data on race, ethnicity, and 

language (REL) has come to be widely embraced 

as an important component for measuring health 

and healthcare disparities in the United States. 

The Impact of COVID-19 on People with Disabilities 73
The information we now have on health and 

healthcare disparities experienced by racial and 

ethnic groups is due to government policies that 

date back decades. Starting with “the landmark 

1985 Secretary’s Task Force on Black and Minority 

Health,” HHS reports came to recognize how 

timely and reliable data could be used to identify 

racial and ethnic health disparities and the factors 

that cause and accompany disparities and to 

monitor progress in reducing disparities.213 In 1997, 

HHS finally adopted a “Data Inclusion policy that 

“required the collection of uniform standard data 

on race and ethnicity in all HHS-sponsored data 

collection activities.”214 Years later, the Institute 

of Medicine issued its seminal report in 2003, 

Unequal Treatment: Confronting Racial and Ethnic 

Disparities in Healthcare, that acknowledged 

how racial and ethnic disparities are “significant 

predictors” for of the quality of care that a person 

of color receives even after accounting for other 

socioeconomic differences.215

Almost 20 years of advocacy later, we see far 

greater awareness among experts and the general 

public of health and healthcare disparities related 

to race, ethnicity, and language (REL). During 

the pandemic, all levels of government openly 

accepted that systemic racial/ethnic discrimination 

and implicit bias contributed to COVID-19 infection, 

treatment, and vaccination disparities among 

people of color, particularly Black, Hispanic, and 

Indigenous persons, a response that was likely 

heightened by cultural and social changes in the 

wake of George Floyd’s death in 2020. Media 

sources established regularly updated dashboards 

that showed disproportionate infection and death 

rates among people of color and the racial and 

ethnic demographic characteristics of vaccinated 

individuals.216 CDC providing national rates of 

vaccination by race and ethnicity, stated that 

“[i]mproving COVID-19 vaccination coverage in 

communities with high proportions of racial/ethnic 

minority groups and persons who are economically 

and socially marginalized is critical because these 

populations have been disproportionately affected 

by COVID-19–related morbidity and mortality.”217

The great majority of states are also reporting 

state vaccination rates by race and ethnicity.218

Even with far greater awareness and 

intentionality, though, state-level collection of 

race and ethnicity data remains highly imperfect. 

Some states’ existing Immunization Information 

Systems still lack capacity to track REL data, 

and adding that capacity could take months, 

while other states have the capacity to record 

race and ethnicity data but the fields are not 

required during data entry.219 Moreover, those 

states that track race and ethnicity have not 

uniformly adopted the clearly defined racial and 

ethnic categories used in federal census data or 

committed to a minimum set of data collection 

standards.220 Inconsistencies and gaps can also 

compound across states and further impede any 

attempt to get a clear national picture of vaccine 

equity; for example, South Carolina “lumps 

together Asians, Native Americans, and Pacific 

Islanders in one category,”221 while “data gaps 

and separate reporting of data for vaccinations 

administered through the Indian Health Service 

[further] limit the ability to analyze vaccinations 

among American Indian and Alaska Native and 

Native Hawaiian and Other Pacific Islander 

people.”222 With race and ethnicity information 

known for only 53 percent of those vaccinated 

as of March 29, 2021, numbers still consistently 

showed that Black and Hispanic populations 

across states received proportionately less 

vaccine than their percentage share of cases, 

of deaths, and of the state’s total population.223

As pointed out by one population health expert, 

incomplete and inconsistent data makes it 

74 National Council on Disability
“harder for us to hold ourselves accountable 

to our own work and to stand up and say to 

the public ‘Here’s the evidence that we are 

trying and we’re making progress.’”224 Not all 

states agreed that improving data collection 

and transparency was crucial to accountability 

for achieving greater equity in the pandemic’s 

impact. “Only about half of US states still provide 

daily updates on key Covid-19 metrics—such 

as new cases, deaths, hospitalizations and 

vaccinations—a trend that worries some public 

health experts.”225

Lessons Learned on Data Collection

The ways in which race and ethnicity data collection was elevated, carried out, and reported 

during the pandemic provide valuable lessons for disability advocates.

■ Persistence Paid Off: REL communities and advocates developed evidence for decades 

on the existence of health and healthcare disparities across multiple delivery contexts and 

argued that without granular REL data and uniform collection standards, there was no way 

to effectively hold providers accountable and encourage measurable quality improvement 

for delivering equitable healthcare. During the pandemic, most government and healthcare 

entities took steps to track race and ethnicity data that confirmed the inequitable impact of 

COVID-19 and showed that states fell far short of achieving vaccination equity.

■ National Leadership is Critical: Federal standards facilitate regional and national data 

analysis and information technology interoperability. The Office of Management and Budget 

(developed a federal government-wide standard for REL data collection in 1997 after 

holding a wide-ranging public process of engagement and field testing. This early standard 

grounds the REL minimum data collection standard under Section 4302 of the ACA and 

paved the way for further work by federal agencies such as the AHRQ when it suggests 

ways for REL data collection to take place.226

■ The Pandemic Exposed Data Gaps: Many experts agree that the pandemic “has shined a light 

on racial data problems that have persisted in U.S. public health for far too long. . . . [the hope] 

is that our lessons from COVID really cause all of us to think about the infrastructure we need 

within out state and nationally to make sure we are prepared next time. Data is our friend.”227

■ Data Collection Needs Will Continue: pandemic data collection cannot end prematurely, 

particularly while disparities in vaccination rates persist among specific populations and herd 

immunity has not been achieved in the country. Moreover, the public health reporting systems 

that states have built or improved since the pandemic started do not have to be limited to 

use with COVID-19. “States have spent 15 to 18 months building up this infrastructure . . . 

By winding down, the question is what will happen to this new infrastructure and skill set. 

By putting this genie back in the bottle, we lose the capacity to take advantage of them.”228

The Impact of COVID-19 on People with Disabilities 75
The disability community has made significant 

strides in establishing itself as a population 

group that is subject to health and healthcare 

disparities,229 but it clearly has not reached the 

point where health and government entities 

will put out disability-specific statistics related 

to coronavirus infection, treatment, deaths, 

and vaccination or search for ways to do so. 

Even at the height of CDC and state reporting 

of COVID-19 cases and deaths, there was no 

attempt to capture the full extent of the virus’s 

toll on people across 

a range of disabilities, 

except for people 

with disabilities who 

happened to intersect 

with characteristics that 

were already tracked, 

such as age. Even 

when the pandemic 

eased, some people 

with disabilities, 

including those who are 

immunocompromised, 

adults with disabilities 

who have difficulty 

leaving their homes, or 

young children with disabilities who are not yet 

eligible for vaccination, could be harmed by the 

decision to cut back on vaccination reporting 

as “[d]aily data reporting provides critical 

“backup” information to help people and public 

officials alike make decisions about the safety 

of engaging in various social activities,”230 and 

especially until the nation reaches herd immunity.

The fragmented nature of healthcare 

delivery and insurance coverage in the United 

States makes it particularly difficult to compile 

complete data on where, how, and under what 

circumstances COVID-19 circulated among 

and killed people with disabilities. Without 

common ways to identify people with functional 

disabilities, common standards for data 

collection, and a common mandate to collect 

this information across states and healthcare 

systems, people with disabilities will remain 

shut out of policymakers’ increased commitment 

to emergency interventions that account for 

disparities and to equitable healthcare overall. As 

one prominent healthcare research organization 

observed, the “wide 

variety in state reporting 

makes it difficult to 

compare between states 

or have a complete 

understanding of how 

people with disabilities 

have been affected by 

the pandemic.”231

The best tools we 

have for baseline granular 

identification of people 

with disabilities, the 

six-disability question 

set in the ACS and 

the Washington Short 

Set on Functioning232 are not in broad use, 

and this shortcoming makes it difficult to even 

begin thinking about how those tools can be 

further refined to better capture people with 

communication disabilities, mental health or 

behavioral health disabilities, and people with 

HCBS needs. All these factors proved to be 

relevant to the high risk borne by people with 

disabilities during the pandemic, but potential 

users of disability identification tools have little 

current incentive to find effective ways to obtain 

additional information.

Without common ways to identify 

people with functional disabilities, 

common standards for data 

collection, and a common mandate 

to collect this information across 

states and health care systems, 

people with disabilities will remain 

shut out of policymakers’ increased 

commitment to emergency 

interventions that account for 

disparities and to equitable health 

care overall

76 National Council on Disability
Surveillance tools such as the BRFSS offer 

another opportunity to gather vaccination 

information, albeit some time after vaccination. 

The BRFSS’s focus on noninstitutionalized adults 

will leave out some people with disabilities 

residing in CCFs, but that is a population for 

which additional demographic information on 

functional disability, race, ethnicity, and other 

characteristics can and should be obtained in any 

event. CDC requested approval on March 12, 

2021, to add an optional module on COVID-19 

vaccination to BRFSS 

that would be available by 

mid-2021. The proposed 

questions include when 

the respondent received 

their vaccination shot(s) 

and “what kind of 

place” the shot(s) were 

received.233 By early 

June, Alaska, Illinois, 

Missouri, New Jersey, 

and North Carolina 

had reported their intention to administer the 

optional COVID-19 vaccine-related module, and 

North Carolina intended to include an additional 

question: “What is the MAIN reason you have 

NOT received a COVID19 vaccination?”234 These 

questions have great potential for providing 

important information about the vaccine barriers 

that people with disabilities encountered and the 

set will be coupled with the six-question disability 

set used in national surveys. The downside is 

that the vaccine module is optional, and any 

given state that chooses to include it may have 

insufficient sample sizes of people with specific 

functional limitations to provide reliable and 

meaningful analysis. If all states administered 

the vaccine module or went so far as to include 

vetted disability-specific data questions, it might 

be possible to combine disability samples across 

states or within a geographic region that included 

a number of states.

Another data collection option is the 

administration of independent, state-specific 

polls or surveys that could be tailored and 

achieve results quite quickly when offered by 

such entities as state or local public health 

departments, health policy groups, university 

research entities, and media, or even large 

healthcare systems such 

as a managed care entity, 

but such surveys can 

be costly, which in turn 

tends to limit sample 

size.235 And again, 

the lack of mandated 

disability inclusion in 

state surveillance means 

that disability is easily 

excluded from data 

gathering. Even with 

REL data, none of the many public and private 

players in healthcare “has the capability by itself 

to gather data on race, ethnicity, and language 

for the entire population of patients.”236 Some 

individuals, including people with disabilities, 

may have sporadic contact with the healthcare 

system for various reasons, such as the lack of a 

regular source of healthcare or being homeless, 

making the gathering of standardized data 

for quality improvement across all health and 

healthcare entities even more important.

The evidence that people with disabilities 

comprise a population group that experiences 

health and healthcare disparities continues to 

grow. The pandemic has established higher 

rates of coronavirus infection, and serious illness 

[A]ttempts to establish the 

overall impact of the coronavirus 

on people with disabilities are 

continually stymied by the failure 

to collect functional disability as a 

demographic characteristic and not 

just an individual medical need or a 

patient diagnosis

The Impact of COVID-19 on People with Disabilities 77
and death upon infection, for at least some 

persons with specific disabilities. But attempts to 

establish the overall impact of the coronavirus on 

people with disabilities are continually stymied 

by the failure to collect functional disability as 

a demographic characteristic and not just an 

individual medical need or a patient diagnosis. 

Health information technology interoperability 

rules provide yet another potential way for patients 

with disabilities to disclose functional disability 

information, but neither version 1 of the U.S. 

Core Data Set for Interoperability put forth by the 

U.S. Office of the National Coordinator for Health 

Information Technology, nor version 2 which is in 

draft form, asks for disability-related demographic 

information.237 A category called “functioning” 

is included in the health record and includes 

questions relating to mental function, mobility, 

and self-care among other elements, but its 

placement in the electronic health record among 

purely medical questions indicates that it is likely 

not a field that could be used to help identify or 

verify people with disabilities as a group subject to 

health disparities. The “missed policy opportunity 

to advance health equity” through the inclusion 

of more granular race, ethnicity, disability, and 

gender identity demographic information was 

noted when the Core Data Set was first being 

adopted: “CMS declined to adopt disability 

status or sexual orientation and gender identity 

because of the lack of consensus on definitions, 

lack of agreed-upon standards, data collection 

and reporting challenges, and disagreement over 

where and how to collect this information in an 

[electronic health record].”238

At some point, the fact that federal and state 

governments continually overlook the need for 

functional disability data begins to cross the line 

from simply being overlooked in prioritization to 

negligence. It is virtually impossible to provide 

real-time accurate data about the impact of 

COVID-19 on people with disabilities or the 

healthcare disparities they experienced during 

the pandemic if state, public health, health plan, 

and provider databases fail to identify someone 

as a person with a disability. This simple fact has 

become increasingly clear over the past couple 

of decades as the U.S. healthcare system has 

come to gradually recognize REL-related health 

and healthcare disparities, and concentrated effort 

has been put into transitioning to electronic health 

records. The fundamental failure of healthcare 

data collection to recognize people with disabilities 

must be decisively changed on multiple levels, 

or policymakers, researchers, and the public will 

never know whether people with disabilities are 

disproportionately dying in the next pandemic 

or emergency, and they will assume that any 

disproportionate impact is purely attributable to 

the presence of disability or a health condition 

rather than a matter of systemic or implicit bias.

Summary of Findings

■ Needed PPE was widely unavailable to 

both those providing and receiving longterm services and supports, placing 

people with disabilities, both those living 

in congregate care situations and those 

living in the community, at higher risk of 

infection, severe illness, and death during 

the pandemic.

■ Implicit bias about living with a significant 

disability is widely prevalent among 

healthcare providers, hospital administrators, 

bioethicists, and healthcare decision makers 

and likely influenced denials of treatment 

and inappropriate referrals to hospice care of 

78 National Council on Disability
people with disabilities, including people of 

color with disabilities who are also subject to 

intersecting stereotypes and systemic racism.

■ There is some awareness among healthcare 

providers and professional associations of 

how people with disabilities have suffered 

historic harm, structural discrimination, and 

unequal care in the delivery of healthcare, 

but this awareness has not yet translated 

into concrete commitments to changing 

healthcare education, professional 

accreditation, and academic research policies.

■ Many of the CSC policies established or 

used by states and hospitals during periods 

when medical beds, equipment, and 

personnel were first strained by high levels 

of coronavirus infection and hospitalization 

discriminated explicitly and implicitly against 

people with disabilities.

■ Longstanding failures of healthcare providers 

and administrators to know and follow 

federal and state disability nondiscrimination 

laws resulted in patients with disabilities 

being denied critical policy modifications and 

accommodations during the pandemic.

■ Basic physical and programmatic 

inaccessibility was widespread in many 

public health responses to the emergency, 

from the establishment of drive-in testing 

sites to procedures for making vaccine 

appointments and providing vaccination.

■ Policymakers have limited data or 

understanding about people with disabilities 

who live in the community and receive HCBS, 

some of whom cannot maintain access to 

the necessities of life while sheltering in 

place and practicing strict social distancing.

■ Current restrictions on how SNAP benefits 

can be used exacerbated the food shortages 

experienced by people with disabilities who 

need assistance with Complex Activities 

of Daily Living or who live in remote rural 

areas, particularly when public transportation 

is also restricted or unavailable.

■ The rollout of COVID-19 vaccines in the 

United States raised competing priorities 

for achieving equitable distribution and 

achieving speedy and efficient vaccination, 

which left out people with disabilities 

who were at high-risk from COVID-19 

but who did not have health conditions 

already established as medically highrisk or who needed logistically complex 

accommodations, such as vaccination in 

their homes.

■ 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, and 

healthcare workers and policymakers 

unaccountable for both failing to include 

people with disabilities during crises and 

improving quality and inclusion for people 

with disabilities in the aftermath of crises.

■ Private health insurance claims information 

contains valuable data on health and 

healthcare disparities experienced by people 

with disabilities, but this information cannot 

be fully accessed or effectively analyzed 

unless these insurers collect demographic 

functional disability information in addition 

to standard information about medical 

diagnoses and health conditions.

The Impact of COVID-19 on People with Disabilities 79
Recommendations

To ensure the United States is prepared to 

swiftly recognize healthcare discrimination and 

appropriately monitor and enforce disability civil 

rights laws on behalf of people with disabilities in 

a future pandemic or similar national health crisis, 

NCD recommends the following actions based 

on our findings about the impact of COVID-19 on 

people with disabilities:

Recommendations for Congress

Congress should:

■ Include functional disability status among any bills that propose improved demographic 

data collection relating to testing, infection, injuries, hospitalizations, and fatalities that 

are related to pandemics, natural disasters, climate change–related emergencies, or any 

other public health emergencies, both within every type of congregate care setting (e.g. 

psychiatric facilities, facilities for people with intellectual and developmental disabilities, 

board and care homes, group homes, and so forth) as well as community settings.

■ In any legislation that addresses shortfalls in the nation’s supply of healthcare providers 

(physicians, nurses, therapists, and so forth) through changes to training programs, 

inclusive recruitment for a diverse healthcare workforce, loan forgiveness that encourages 

healthcare providers to work with underserved populations, or other innovative targeted 

incentive measures, include healthcare providers who are familiar with the needs of 

disability communities such as Deaf and Hard-of-Hearing people, people with complex 

rehabilitative needs, people with intellectual and developmental disabilities, people with 

serious mental illness, and so forth.

■ Require state collection of healthcare demographic data relating to functional disability and 

HCBS use for all Medicaid enrollees, including better data collection across the full range 

of long-term care, group homes, and congregate settings licensed, certified, or approved 

by the state.

Recommendations for Federal Agencies

HHS should:

■ Require all hospitals, hospital systems, and managed care plans that receive federal 

financial assistance to increase public transparency of, and nondiscrimination and due 

80 National Council on Disability
process within, CSC guidelines and medical rationing policies adopted during public health 

emergencies and emergency surge situations. These guidelines and policies should be 

clearly posted on all the entity’s websites and hospital and appropriate provider network 

websites.

■ Conduct a national convening of experts, including disability advocates and people with 

disabilities to review how discriminatory CSC and medical rationing policies developed and 

may continue to influence healthcare decision making in future public health emergencies, 

and to make further recommendations for alleviating the impact of CSCs and medical 

rationing on people with disabilities, people of color, older persons, and other groups that 

experience health and healthcare disparities.

■ Include functional disability status among the demographic data that must be collected 

by the Secretary of HHS and posted on Nursing Home Compare on COVID-19 cases and 

deaths under the COVID-19 Nursing Home Protection Act (S.333) or other bills introduced 

to improve demographic data collection on nursing home infections, illnesses, deaths, or 

resident transfers to hospitals

■ Expand on the data collection standards and requirements laid out in Section 4302 of 

the ACA to require any healthcare or public health program, activity, or survey (including 

population surveys conducted by the Bureau of the Census) that is federally conducted or 

that receives federal financial assistance to collect and report data on functional disability 

status for applicants, recipients, or participants (though the provision of such information 

from individual applicants, recipients, and participants should always be voluntary).

■ HHS OCR and DOJ should work with state civil rights counterparts to issue early general 

guidance clarifying that there is nothing in federal or state law that automatically relieves 

covered entities from their preexisting disability nondiscrimination obligations, including 

the obligation to provide reasonable modifications and accommodations to people with 

disabilities, in the event of an epidemic, pandemic, natural disaster, climate change 

disaster, or other public health emergency.

■ HHS OCR should:

● Develop a Patient Bill of Rights for People with Disabilities, written in plain language, 

and including information on the following rights that pertain to healthcare: effective 

communication, policy modifications, treatment without discrimination, access to 

personal support persons, use of personal medical equipment, physical accessibility, 

Recommendations for Federal Agencies: continued

(continued)

The Impact of COVID-19 on People with Disabilities 81
Recommendations for Federal Agencies: continued

choice of less invasive reasonable treatment or health maintenance alternatives; having 

an advance directive, POLST, or DNR orders without undue influence, information on 

and assistance for returning to the community from hospital or institutional care, and 

freedom from assumptions about one’s quality of life and capacity to benefit from 

treatment or survive treatment because of the presence of a disability or particular 

condition.

● Initiate an ongoing process for reviewing crisis standards of care and medical rationing 

policies of states, healthcare systems, and hospitals in anticipation of other public health 

emergencies that will strain local, regional, or national resources, and provide technical 

assistance for compliance with disability nondiscrimination in the formulation of CSC and 

rationing policies.

■ HHS and FEMA should require disability expertise and representation on federal pandemic 

planning committees, and ensure true inclusivity in all local, state and federal emergency 

responses for a wide range of disabilities and co-occurring conditions, including lesser 

known or nonvisible disabilities such as multiple chemical sensitivity, and disability-specific 

concerns such as including personal care assistants and direct support professionals in 

federal emergency measures for strengthening Medicaid and frontline healthcare workers 

during an emergency (e.g., authorization of overtime hours or hazard payment if providing 

assistance to a person with disabilities who is sick or has other direct care workers who 

are sick, distribution of virus tests and PPE, and so forth).

■ HHS, U.S. Census Bureau, FEMA—Interagency Cooperation: Federal agencies including 

CDC, CMS, FEMA, and the U.S. Census Bureau, should collaborate and form a broader 

interagency work group to identify methods to efficiently collect functional disability 

information during public health and other emergencies in order to identify how many 

people with disabilities are affected (e.g., infection, illness, injury, hospitalization, death), 

whether they live in a type of congregate care facility or in the community or transition 

between them during the emergency, and whether they have HCBS needs. They should 

also develop methods to identify how HCBS workers are affected by public health or 

other emergencies (e.g., infection, illness, injury, hospitalization, death) to inform policies 

and actions that will be needed to maintain necessary HCBS during and after these 

emergencies. Data should be published on regularly updated publicly available websites.

■ HHS should assume primary responsibility for implementing, monitoring, and enforcing 

the data collection requirements in Section 4302 of the ACA. Data should be collected at 

82 National Council on Disability
the smallest geographic level such as state, county, zip code, or institutional levels, using 

disability data collection tools such as current population survey questions included in 

the ACS, those recommended by the Washington Group on Disability Statistics, or other 

equivalent data collection measures developed through interagency cooperation. Disability 

data collection tools should also be further developed to better capture people with 

intellectual and developmental disabilities, communication disabilities, and other diagnostic 

or functional limitations that may be currently excluded from or undercounted by the ACS 

or Washington Group survey questions. The U.S. Census Bureau, the HHS, CMS, and the 

CDC should aggregate the data on a common website for use by researchers and the 

public.

■ HHS, working through the Health Resources and Services Administration should 

assume primary responsibility for implementing and appropriately funding Section 5307 

of the ACA,239 including establishing and developing criteria for grants, contracts, or 

cooperative agreements for developing and evaluating research, demonstration projects, 

and model curricula in cultural competency, prevention, public health proficiency, reducing 

health disparities, and aptitude for working with individuals with disabilities. HHS should 

identify effective best practices and model curricula identified through projects initiated 

under Section 5307 and mandate their use in health professions schools and continuing 

education programs to address systemic and implicit disability bias in the health 

professions.

■ NCHS should work with state vital statistics offices to initiate revisions in the U.S. 

Standard Certificate of Death to include functional disability and HCBS consumer 

information in the demographic section of death certificates and obtain the approval of 

completed revisions from the HHS Secretary.

■ HHS/ACL, HHS/OCR, and DOJ should work together to establish and fund a national 

healthcare technical assistance center to inform a range of healthcare providers on civil 

rights issues regarding patients with disabilities. The Center would provide healthcare 

providers, medical educators, professional associations, and public health authorities with 

information and trainings on implicit disability bias, the importance of policy modifications 

and reasonable accommodations to providing effective healthcare, and the critical role 

that support persons play in maintaining the health and functional capacity of people 

with disabilities. ACL could play a central coordinating role over the Center, either as an 

Recommendations for Federal Agencies: continued

(continued)

The Impact of COVID-19 on People with Disabilities 83
independent entity or as an adjunct component of existing entities that provide disability 

expertise such as the regional ADA Centers, while both HHS OCR and DOJ can provide 

technical and legal expertise, given their overlapping regulatory authority over the gamut of 

healthcare entities and providers.

■ Department of Agriculture should monitor and enforce physical, website, and procedural 

accessibility to ensure that people with disabilities are able to enroll in SNAP and fully use 

their SNAP benefits, including modifications needed by people with disabilities who may 

require grocery delivery and assistance during pandemics and public health emergencies. 

In addition, rather than require all persons with disabilities to meet the strict asset tests 

imposed on Supplemental Security Income and Social Security Disability Insurance 

payments, recognize persons with disabilities through broad-based categories for eligibility, 

for example, HCBS consumers as they are likely to have higher disability-related household 

expenses that make it harder to meet food expenses.

Recommendations for Federal Agencies: continued

Recommendations for States

States should:

■ Specify and adequately fund a designated state agency or entity that will take individual 

complaints, provide real-time technical assistance, and initiate investigations on allegations 

of discrimination and accessibility barriers by healthcare entities during public health 

emergencies, including communication accessibility, access to support persons and 

needed policy modifications and accommodations, and nondiscrimination in medical 

rationing and crisis standards of care.240

■ Require hospitals, managed care entities, and healthcare systems operating in the 

state, including university teaching hospitals and systems, that are licensed, regulated, 

or certified in the state or that receive any state funding or that serve any Medicaid 

enrollees to include people with disabilities or disability advocates on their medical ethics 

committees and in the development, adoption, or revision of crisis standard of care or 

medical rationing policies.

84 National Council on Disability
Recommendations for States: continued

■ State Departments of Public Health must strengthen ties with disability and communitybased organizations such as independent living centers and aging and disability networks 

to build capacity to reach people with disabilities through trusted messengers if outreach is 

needed on newly developed or repurposed medications or treatments, and to strengthen 

the department’s capacity to ensure full accessibility, including threshold languages, in its 

own outreach, emergency guidance, and logistical operations.241

Recommendations For Additional Entities

■ Association of State Governors: Develop a set of strategies, best practices, and data 

collection standards (including privacy concerns and addressing interoperability needs) for 

collecting functional disability information on residents across the full range of congregate 

living facilities that are licensed, certified, or otherwise recognized or funded by a state 

(e.g., psychiatric facilities, intermediate care facilities, board and care homes, group homes, 

and so forth).

■ American Medical Association: Develop and disseminate mandated requirements and 

standards relating to disability rights and implicit bias training for physicians and related 

healthcare professions involved in setting public health emergency procedures, medical 

rationing, and standard setting. Such training should be a required component of continuing 

professional education. The American Medical Association should also encourage reporting 

and academic investigation that reveals health and healthcare disparities experienced by 

people with disabilities, including people of color with disabilities.

■ National Association of Insurance Commissioners: Develop model disability data 

collections standards and best practices that state departments of insurance could enact 

as part of Market Conduct Annual Statement reporting requirements on healthcare 

insurers licensed or practicing in the state.

The Impact of COVID-19 on People with Disabilities 85
86 National Council on Disability
Chapter 2: Impact of COVID-19 on People with 

Disabilities in Congregate Care Facilities

COVID-19 Had a Devastating Impact 

on People with Disabilities in 

Congregate Care Facilities

No demographic in the United States 

experienced COVID-19 more dramatically 

than people living in CCFs. The way 

people in congregate settings live and receive 

care made the pandemic especially difficult to 

contain and, as a result, greatly increased the risk 

of exposure for residents 

and staff.

CCFs include LTCFs 

like nursing homes and 

assisted living facilities, 

and other congregate 

settings such as state 

psychiatric hospitals, 

intermediate care 

facilities for individuals 

with intellectual 

and developmental 

disabilities, board and 

care homes, and group 

homes. On the front 

lines of a fast-changing 

pandemic, CCFs 

reported staff shortages, 

inadequate PPE, inconsistent and slow testing, 

and limited space for resident isolation and 

quarantine. Residents of CCFs also experienced 

extreme isolation due to COVID-related 

restrictions on visitors, and many died alone.

Most significantly, due to the difficulty of 

ensuring physical distancing, isolation, and 

quarantine in CCFs, rates of transmission and 

death from COVID-19 in these facilities were 

extraordinary. As of March 2021—a year into 

the pandemic—over one-third of all COVID-19 

deaths in the United 

States occurred in 

LTCFs, including nursing 

homes and assisted 

living facilities. One 

hundred and eighty-one 

thousand individuals 

in LTCFs died from 

COVID-19, accounting 

for more than one-third 

of all COVID-19 deaths in 

the United States, from 

a group of individuals 

constituting less than 

3 percent of the nation’s 

population.242 Almost 

1.5 million cases of 

COVID-19 occurred in 

LTCFs, with nearly 35,000 facilities reporting 

known cases.243

As of March 2021—a year into 

the pandemic—over one-third of 

all COVID-19 deaths in the United 

States occurred in LTCFs, including 

nursing homes and assisted living 

facilities. One hundred and eightyone thousand individuals in LTCFs

died from COVID-19, accounting for 

more than one-third of all COVID-19 

deaths in the United States, from 

a group of individuals constituting 

less than 3 percent of the nation’s 

population

The Impact of COVID-19 on People with Disabilities 87
However, these numbers do not account for 

cases and deaths in other types of CCFs for 

people with disabilities, like state psychiatric 

hospitals, intermediate care facilities for 

individuals with intellectual and developmental 

disabilities, board and care homes, and group 

homes.

Data from these other types of CCFs is less 

available, but what data exists indicates that 

residents and staff who lived and worked in 

other types of CCFs also had a heightened risk of 

contracting COVID-19 and of dying from the virus. 

One would expect the data in these facilities 

to be comparable to that in LTCFs, given the 

similarities in how they operate.

Living in a CCF exposes people with 

disabilities to the 

many individuals who 

enter the facility on a 

regular basis—including 

caregivers, other 

residents, and staff. A 

study of Connecticut 

nursing homes found that those with “more 

residents at the beginning of the pandemic and 

with greater shares of beds filled had significantly 

more cases and deaths per licensed bed than 

facilities operating at lower capacity . . . speak[ing] 

to the importance of density and intrafacility 

spread.”244 Moreover, nursing homes with higher 

staffing rates and a lower staff-to-resident ratio 

had fewer COVID-19 incidences and deaths.245

The risk of transmission based on density and 

traffic in and out is similar in all types of CCFs.

The high frequency with which residents 

and staff interact and the difficulty of practicing 

physical distancing within these facilities 

contribute to transmission.246 Consistent with 

these observations, a July 2020 report found 

that people with intellectual disabilities residing 

in group homes were four times more likely to 

contact COVID-19, twice as likely to die than 

people with intellectual disabilities receiving 

care in noncongregate settings, and eight times 

more likely to die than the general population.247

Further, a recent study found that individuals 

admitted to a psychiatric inpatient setting 

faced an increased risk for infection and death 

compared with similarly situated individuals in the 

community.248

These risks may be heightened where 

residents have certain types of impairments that 

make them particularly vulnerable. For example, 

studies have shown higher rates of COVID-19 

and death in people with intellectual disabilities, 

including a recent study 

showing that people with 

intellectual disabilities 

are 2.5 times as likely as 

others to be diagnosed 

with COVID-19 and 5.9 

times as likely to die 

from it.249 Similarly, a recent study published in 

the Journal of the American Medical Association

found that individuals with a diagnosis of 

schizophrenia were 2.7 times as likely to die 

from COVID-19 as individuals without psychiatric 

diagnoses, controlling for demographic factors 

such as age, race, and sex and for known medical 

risk factors.250

Staffing shortages further exacerbated the 

vulnerabilities of CCF residents and staff. As 

one state human services official explained, 

“Pre-COVID, we have had staffing shortages 

in [congregate care and group home] settings 

across Minnesota, but what we’re experiencing 

right now is something different . . . as staff 

test positive for COVID-19, they’re having to 

[P]eople with intellectual disabilities 

are 2.5 times as likely as others to

be diagnosed with COVID-19 and 

5.9 times as likely to die from i

88 National Council on Disability
quarantine, which leaves care facilities in a 

precarious position.”251

All types of CCFs reported experiencing 

the same unprecedented staff shortages due 

to COVID-19. A state-run psychiatric hospital 

in Pennsylvania was so short-staffed that even 

after closing a patient ward on weekends and 

some weekdays, the hospital still could not 

meet a 1:4 aide to patient ratio, the professional 

recommendation.252 Some states looked to 

staffing agencies to recruit emergency workers, 

others called in the National Guard as a last 

resort.253

Where visitation restrictions combined with 

staff shortages, facilities altered the provision 

of care, including fewer therapies and greater 

restrictions on the mobility of residents within 

facilities. As a result, CCF residents experienced 

increased rates of isolation, depression, and 

physical deterioration.254 In Connecticut, “despite 

differences in methods and frequency of 

visitations, nearly all family members reported 

the physical and emotional health of residents 

declined significantly without frequent, in-person 

interactions with the family members and 

caregivers who had provided critical support for 

activities of daily living.”255

Limited access to testing and PPE worsened 

the already dire situation in CCFs. A fall 2020 

investigative report from Senator Elizabeth 

Warren (D-MA) found that none of the 10 large 

behavioral health treatment program operators 

surveyed “conduct[ed] routine daily or weekly 

testing of staff or patients at all their facilities” 

and “experienc[ed] turnaround times of a week 

or more for test results.”256 These facilities were 

“generally not able to perform routine testing 

of asymptomatic individuals” in line with CDC 

recommendations for CCFs. Only two of the 10 

providers reported testing new patients upon 

admission. One provider attributed limited testing 

to the “difficulty of obtaining testing supplies” 

and reliance on “local health departments.”257

Another provider shared that “as a sub-acute 

provider, our company facilities and staff seemed 

to be near the bottom of the list to receive both 

assistance with emergency supplies or financial 

assistance,” so they had to rely on “their own 

supply chains for PPE, without the assistance of 

local health or emergency response officials.”258

The report also found that “most providers 

reported shifting care into telehealth formats 

and using technology to arrange virtual visits 

and group meetings,” yet difficulties “obtaining 

reimbursement from commercial insurers for 

services provided by telehealth” remained a large 

barrier to care.”259

In sum, the COVID-19 pandemic exposed 

anew many vulnerabilities of our congregate 

care systems, including that congregate settings 

placed people with disabilities at a high risk 

of infection, serious illness, and death. While 

vaccinations greatly reduced the death tolls in 

CCFs across the country, the unpredictability of 

the virus, difficulties of getting vaccines to some 

facilities, and high rates of vaccine hesitancy 

among many facility staff led to outbreaks at 

dozens of facilities even after vaccinations 

occurred at the facilities.260

People with Disabilities were Stuck 

as Diversions and Transitions from 

CCFs Slowed to a Near Halt

While the dangers imposed by the pandemic in 

CCFs created an urgency to transition residents 

to their own homes or other noncongregate 

community settings to keep people safe and to 

allow for distancing within facilities, the opposite 

The Impact of COVID-19 on People with Disabilities 89
happened. Due to the pandemic’s impact on 

community service providers like direct support 

professionals, assertive community treatment 

team staff, case managers, employment services 

providers, and peer support workers, transitions 

and diversions in most places ground to a halt, 

even as unprecedented efforts were made to 

reduce the census of many jails and prisons 

due to COVID-19 transmission risks.261 The 

National Governors Association observed that 

while at least some states continued facilitating 

discharges from state psychiatric hospitals, 

others “halted or slowed discharges.”262

Among other things, community service 

providers were unable to enter CCFs to engage 

and assist residents 

with transitions to the 

community, and in many 

cases had fewer staff 

available due to staff 

illness, quarantining after 

exposure to the virus, 

or family or childcare 

issues. While Centers 

for Medicare & Medicaid 

Services (CMS) guidance allowed essential 

workers into nursing homes and other LTCFs, 

many states did not designate community 

service providers and individuals conducting 

“in-reach” to engage people with disabilities 

in institutions and assist them with transition 

as essential workers. In North Carolina, inreach workers helping people with psychiatric 

disabilities transition out of adult care homes 

were designated as essential workers able to 

enter the facilities as a result of advocacy by 

the court monitor in an Olmstead settlement, 

but that designation took four months to 

accomplish.263

Complicating the situation, many nursing 

homes and group homes for people with IDD/DD 

could not safely readmit people who needed to 

be temporarily hospitalized during the pandemic. 

In New York, for example, the “OPWDD [Office 

for People with Developmental Disabilities] 

issued guidance instructing providers to accept 

individuals only if they could safely accommodate 

them in the group home” such that “people 

who could not be safely accommodated either 

remained at the hospital or were served in one 

of the over 100 temporary sites established for 

COVID-19 recovery efforts.”264

While telehealth was used to facilitate 

communication between community providers 

and individuals in many 

CCFs, CCFs often 

lacked reliable internet 

access, tablets and 

other devices were often 

difficult for individuals 

to use, and residents 

were often not trained 

in how to use them. This 

lack of technology and 

training impaired provider access to residents, 

and isolated residents from communication 

with loved ones and other forms of social 

interaction. Moreover, many activities essential 

for community transition that could have been 

conducted virtually were often not—for example, 

in-reach activities, assessments and service 

planning by community providers, and tours of 

community housing.265

In response to deaths in CCFs from COVID-19, 

advocates filed lawsuits seeking to quickly move 

people out of state psychiatric hospitals in the 

District of Columbia, California, Connecticut, and 

Massachusetts where high rates of COVID-19 

[A]dvocates filed lawsuits seeking 

to quickly move people out of state 

psychiatric hospitals in the District 

of Columbia, California, Connecticut, 

and Massachusetts where high 

rates of COVID-19 transmission and 

deaths were occurring

90 National Council on Disability
transmission and deaths were occurring.266

A mental health expert in one of these cases 

observed:

State psychiatric wards are typically 

designed to hold between twenty to forty 

patients per unit. Having that many people 

living in rooms with two or more other 

patients and interacting in a confined area 

with a large number of staff is obviously 

not consistent with “social distancing.” . . . 

Even if congregate care facilities could 

be rendered safe by observance of CDC 

guidelines, it would not happen. There is no 

effective way to enforce social distancing in 

a psychiatric ward. . . . 

Psychiatric units are 

designed to facilitate 

staff and patient 

interaction. Patients 

are encouraged with a 

variety of incentives to 

attend group treatment, eat, socialize, and 

watch television together in an open area, 

attend community meetings, and exercise 

as a group. Avoiding the isolation that is 

compelled by the virus is so ingrained in 

treatment protocols that licensing standards 

typically prohibit staff from requiring 

patients to stay in their room unless they 

are an imminent danger to themselves or 

others.”267

Some of this litigation resulted in better 

infection control practices in the hospitals. It did 

not, however, succeed in securing facility census 

reductions, in part because vaccination efforts 

and decreases in COVID-19 outbreaks made this 

relief more difficult to secure.268

These cases demonstrate the difficulty that 

disability advocates have experienced in trying 

to secure relief that would increase the pace of 

discharges from institutional settings, even where 

deaths from COVID-19 in institutions reached 

alarming rates.

COVID-19 Exacerbated Existing 

Civil Rights Violations Involving 

Needless Institutionalization and 

Segregation

The disability community and disability advocates 

have long fought to reduce the use of congregate 

settings for people with disabilities. Individuals 

with disabilities overwhelmingly thrive in the 

community when they 

are provided HCBS. The 

ADA and its integration 

mandate require that 

public entities administer 

services to people with 

disabilities in the most 

integrated setting appropriate, unless doing 

so would fundamentally change their service 

systems.269 HCBS provides people with an 

opportunity to live full lives in the communities 

where they and their support systems are 

located, and, as we learned during COVID-19, 

serving people at home rather than in a CCF, 

along with other safety precautions, such as PPE, 

helps to control the spread of the virus.

In 1999, the U.S. Supreme Court affirmed 

that people with disabilities have a legal right 

to community-based care. The Court found 

that needless institutionalization “perpetuates 

unwarranted assumptions that persons so isolated 

are incapable or unworthy of participating in 

community life.”270 In addition, “confinement in 

an institution severely diminishes the everyday 

[S]erving people at home rather than 

in a CCF, along with other safety 

precautions, such as PPE, helps to 

control the spread of the virus

The Impact of COVID-19 on People with Disabilities 91
life activities of individuals, including family 

relations, social contacts, work options, economic 

independence, educational advancement, and 

cultural enrichment.”271 As such, the needless 

segregation of people with disabilities in institutional 

settings is a form of disability-based discrimination. 

Olmstead established that people with disabilities 

have the right to receive a public entity’s services in 

the most integrated setting.

The impact of COVID-19 on CCFs meant that 

people with disabilities not only experienced 

needless segregation on a widespread basis, 

but now that segregation also came with serious 

risks of infection and death from COVID-19. 

Moreover, the pandemic’s impact in slowing 

down discharges and diversions from CCFs and 

hampering the community service system meant 

that people with disabilities had little chance of 

achieving their right to community integration 

and were stuck in CCFs that in many cases had 

become dangerous.

Even for individuals who were class members 

in Olmstead settlement agreements that 

afforded them specific rights to transition out 

of CCFs, enforcing those rights became an 

enormous challenge as states fell far behind on 

the obligations in these settlements and were 

unable to conduct certain activities required by 

the settlements due to the pandemic, including 

activities that required face-to-face contact or 

that could not be conducted through telehealth 

because of poor internet access, lack of 

equipment, the inability to train individuals in how 

to use the equipment, or other issues.

In one state, community providers advocated 

for the state to halt diversion and transitions 

under two Olmstead settlements because they 

said they could not maintain adequate staffing and 

considered all individuals transitioning out of these 

institutions as “high-risk” for community living in 

light of the providers’ capacity concerns. Providers 

also expressed concerns about the impact of 

loneliness on individuals living in the community 

if providers were not spending as much time 

with them, even though isolation was even more 

dramatic in CCFs, particularly with staff reductions 

during the pandemic, and some facilities 

prohibited residents from even going outside.272

Despite budget increases to support diversion 

and transition, including the hiring of additional 

staff and allowing telehealth for services, and 

despite the fact that hundreds of individuals died 

of COVID-19 in the nursing homes at issue in 

one of these settlements, transitions under the 

settlements were largely halted. During 2020, 

the rate of transitions of individuals from these 

institutions was the lowest since the settlements 

had begun more than 10 years earlier.273

The Biden Administration DOJ is reinvigorating 

the federal government’s Olmstead enforcement 

efforts. In June 2021, it entered an Olmstead

settlement with Maine’s Department of Health 

and Human Services requiring an “exceptions 

process” allowing individuals to show that 

modifying Maine’s caps on HCBS Medicaid 

waiver costs and/or service amounts is necessary 

to ensure that people with intellectual disabilities 

or autism spectrum disorders can receive 

adequate and appropriate services in the most 

integrated setting appropriate to their needs. 

The settlement resolved a complaint by a man 

with intellectual disabilities who, as a result of 

the state’s waiver caps, was at risk of having to 

move to a congregate setting to access needed 

services.274 One month earlier, it issued a findings 

letter detailing Olmstead violations by Alameda 

County, California, in placing people with 

psychiatric disabilities at risk of institutionalization 

92 National Council on Disability
and incarceration by failing to provide needed 

community-based services.275

More Could Have Been Done to 

Discharge and Divert People with 

Disabilities from CCFs during the 

Pandemic

While the pandemic created real challenges for 

transitioning and diverting individuals from CCFs, 

in most instances many steps could be taken 

to work around these challenges. For example, 

North Carolina, to promote compliance with an 

Olmstead settlement, developed protocols for 

local management entities in order to quickly 

transition people out 

of state psychiatric 

hospitals, including 

challenging providers 

to report barriers to the 

state for remediation. 

As a result, the state 

successfully diverted 

40 percent of people 

from entering board 

and care facilities called 

“adult care homes.”276 Though transitions out 

of these facilities did not reach prepandemic 

levels, they continued despite barriers and 

obstacles with visitation and transportation. The 

state transitioned and diverted 331 individuals 

into supported housing between March 1 and 

December 31, 2020, and the number of people 

who stayed in the community after exiting adult 

care homes remained steady.

In addition, a number of individual Centers 

for Independent Living led efforts to transition 

individuals out of CCFs. These centers took 

advantage of funds directed to independent 

living centers through the Coronavirus Aid, Relief, 

and Economic Security Act of 2021 (CARES) as 

well as other emergency resources to quickly 

set up temporary housing and transition people 

out of congregate settings. These innovative 

partnerships provided potential solutions to longstanding problems with transition and diversion, 

and investments should continue beyond the 

pandemic.

In Denver, Atlantis Community, Inc., an 

independent living center, launched a pilot 

program called “the Emergency Relocation 

of People with Disabilities out of Congregate 

Settings” to transition people out of CCFs 

including acute care hospitals, assisted living 

facilities, nursing homes, 

congregate shelters for 

people experiencing 

homelessness, hospitals, 

and physical rehabilitative 

hospitals. The program 

“started with the basic 

idea of gathering a 

group of 9 people and 

moving them into a hotel 

for a minimum 14 day 

quarantine period while services, supports, and 

housing are set up with the individuals for more 

permanent housing in the community.”277 Using a 

combination of funds from CARES Act, Medicaid, 

state housing vouchers, and private foundations 

and donors, Atlantis also hired and trained (and 

housed) people experiencing homelessness 

as caregivers for the individuals transitioning. 

Every person who participates in the pilot 

program is set up with a state housing voucher 

and supported in finding long-term, sustainable 

housing. Roads to Freedom independent living 

center in Pennsylvania used a similar model of 

moving people from nursing homes to hotels and 

[North Carolina] transitioned 

and diverted 331 individuals into 

supported housing between March 1 

and December 31, 2020, and the 

number of people who stayed in the 

community after exiting adult care 

homes remained steady

The Impact of COVID-19 on People with Disabilities 93
then to more permanent housing, using CARES 

Act, FEMA funds, grants, and other funding. Both 

of these programs found that once individuals 

were transferred to a hotel, they were able to 

secure permanent housing of the person’s choice 

within approximately a month or one and a half 

months.278 In the Denver program, state rental 

subsidies paid for community housing. The 

Pennsylvania program used federal subsidies, 

including Section 8 Housing Choice Vouchers, 

Section 811 supportive housing for people with 

disabilities, and public housing. In both programs, 

Medicaid paid for supportive services.

Experts in one of the cases seeking to reduce 

the census of institutions during the pandemic 

stated: “Based on our 

years of experience 

managing psychiatric 

hospitals and other 

facilities, planning for 

the successful transition 

of individuals with 

serious mental illness 

from state psychiatric 

hospitals can be accomplished, even under these 

circumstances, through individualized planning 

and using all available resources, including 

natural supports.”279 Experts in these cases 

recommended that discharge determinations be 

made using a different standard than in ordinary 

times, ensuring that individuals’ basic needs will 

be met in the community; that facilities explore 

whether residents have family or friends who 

could house them if provided with appropriate 

supports; that available capacity in community 

programs be used to permit discharges; that 

temporary housing in hotels be used if more 

permanent housing options are not immediately 

available; that community providers be included in 

the process of assessing discharge potential and 

planning for transition; and that additional funding 

to enhance community services be considered.280

Concerns about isolation and loneliness 

in the community should not be used as an 

excuse to keep people institutionalized; similar 

concerns exist in institutional settings, particularly 

during a pandemic.281 Providing individuals 

with technology to more easily communicate 

can reduce isolation and can also help with 

telehealth services and virtual transition efforts.282

For example, the California Foundation for 

Independent Living Centers purchased and 

distributed laptops to people with disabilities 

living in the community and agreed to pay 

internet costs for several 

months.283 These tablets 

“allow[ed] people to take 

cooking classes, peer 

classes, and even attend 

a disability athletics 

fair.”284 Similarly, many 

peer support providers 

have transitioned 

efforts to Zoom to continue engagement during 

the pandemic. In North Carolina, community 

providers used Zoom to communicate 

with psychiatric facility social workers to 

facilitate quick discharges of individuals to the 

community.285 One North Carolina community 

service provider employed robots to assist 

individuals in the community with medication and 

case management during the pandemic.286

Unfortunately, efforts to move people into 

the community remained sparse because little 

was done on a state level to facilitate discharges 

and diversions from CCFs, and most people in 

congregate settings at the start of the pandemic 

remained there.

Concerns about isolation and 

loneliness in the community should 

not be used as an excuse to keep 

people institutionalized; similar 

concerns exist in institutional settings, 

particularly during a pandemic

94 National Council on Disability
Limited Federal Guidance for CCFs 

Hindered Responses During Early 

Days of COVID-19

As the federal government wrestled with the 

COVID-19 pandemic in its early days, the CDC 

issued general guidance instructing how nursing 

homes and healthcare settings should control 

infection and ensure equitable delivery of care 

but not for other CCFs, like group homes. CDC 

reports issuing general guidance for nursing 

homes and healthcare settings as early as 

January 2020 and on March 1, 2020.287 CMS 

issued a memo on March 13, 2020, and a toolkit 

on April 4, 2020, with best practices for nursing 

homes, and, together, CMS and CDC issued 

recommendations on 

April 2, 2020, concerning 

COVID-19 transmission 

in nursing homes.288 A 

March 30, 2020, CMS 

guidance concerning 

intermediate care 

facilities for people with intellectual disabilities 

and psychiatric residential treatment facilities 

addressed infection control and prevention 

practices to prevent the transmission of 

COVID-19 in these facilities.289 These guidance 

documents focused mainly on infection 

control, including recommendations for visitor 

restrictions, and emphasized the importance of 

social distancing.290 In many facilities, compliance 

with this distancing guidance would require the 

facilities to discharge and divert people, but CDC 

did not specifically discuss the need to increase 

discharges and diversions to community settings.

CDC also published guidance to administrators 

of assisted living facilities on April 16, 2020.291

This guidance, again, focused almost exclusively 

on basic infection control within facilities—

including recommendations that facilities 

mandate residents wear cloth face masks, 

regularly disinfect, cancel group activities, 

implement social distancing, “restrict . . . all nonessential personnel,” and “ask residents not to 

leave the facility except for medically necessary 

purposes.” The guidance also instructed facilities 

to isolate suspected positive individuals in their 

rooms or, where facilities could not provide 

adequate care, to transfer individuals to another 

location (e.g., alternate care setting, hospital) 

that was equipped to adhere to recommended 

infection prevention and control practices.292

Despite the widespread deaths of individuals 

with disabilities in CCFs 

during the first weeks 

of the pandemic—by 

April 23, 2020, more 

than 10,000 deaths 

had been reported 

in LTCFs in the 23 

states that publicly reported death data for 

these facilities293—it was not until May 28, 

2020, that CDC released targeted guidance for 

community-based congregate settings. In CDC’s 

“Guidance for Group Homes for Individuals with 

Disabilities” and, later, its “Guidance for Shared 

or Congregate Housing,” CDC acknowledged 

that some individuals with disabilities may be 

unable to socially distance or wear face masks 

and recommended that facilities consult with 

local “Departments of Behavioral Health and 

Developmental Disabilities” for “information on 

and resources for behavioral techniques.” The 

guidance recommended that facilities “plan for 

essential outings,” but focused only on resident 

use of public transportation to continue working 

By April 23, 2020, more than 10,000 

deaths had been reported in LTCFs 

in the 23 states that publicly reported 

death data for these facilities

The Impact of COVID-19 on People with Disabilities 95
or attending medically necessary medical 

appointments, not to partake in diversion or 

transition efforts. CDC also recommended that 

CCF residents “continue to receive medical 

care for underlying conditions and evaluation 

or new symptoms or illnesses,” including by 

investigating where “providers . . . have new 

ways to be contacted or new ways of providing 

appointments,” like telehealth.

Though CDC revised its prior 

recommendations to fully restrict the mobility 

of CCF residents, it continued to recommend 

that CCFs only allow “essential” visitors, which 

contributed to limited access for necessary 

direct support workers and community 

service providers.294 The dividing line between 

essential and nonessential visitors proved 

murky, and, in practice, was often a difficult 

one for facilities to manage.295 While facility 

staff and personal care attendants were 

considered essential and therefore allowed 

into facilities to provide necessary care to 

residents, community transition support 

workers were not always considered essential, 

which slowed transitions out of CCFs. CDC 

also said facilities should “avoid transferring 

residents with disabilities to alternate settings, 

whenever possible, as a solution to staffing 

issues,” which contributed to the hampering 

of moving individuals into lesser density 

community-based settings.296

Similarly, states offered little guidance for 

CCFs beyond infection control procedures within 

the facilities. For example, New York issued 

guidance for congregate residential settings, 

but the guidance focused on policies for group 

environments, social distancing, infection 

control, visitation, and testing.297 Pennsylvania 

issued guidance for individuals in personal care 

homes, assisted living residences, and private 

intermediate care facilities.298 The guidance 

mostly provided guidance for infection control, 

but also detailed the allowance of compassionate 

care visitation if a resident has a “significant 

change” in condition.299

Until the early months of 2021, under the 

Biden Administration, there was little public 

recognition that without efforts to move people 

out of crowded institutional or congregate 

settings, infection control efforts that relied 

primarily on social distancing would continue to 

leave CCF residents and staff at risk.

Initial federal guidance for emergency use 

vaccines also failed to prioritize all residents 

of CCFs equitably. The National Academies 

of Science, Engineering, and Medicine’s 

“Framework for Equitable Allocation of 

COVID-19 Vaccination” tiered groups for vaccine 

distribution in priority order, including as key 

populations “people who live and/or work in 

congregate settings,” “older adults living in 

senior facilities,” and “long-term care facility 

residents.”300 Phase 1a, making vaccination 

available to the highest priority group, included 

“high-risk health workers” that “are involved 

in direct patient care.”301 Phase 1b, the next 

phase, “focuse[d] attention on two groups 

that [we]re particularly vulnerable to severe 

morbidity and mortality due to COVID-19: (1) 

people of all ages with comorbid and underlying 

conditions that put them at significantly higher 

risk and (2) older adults living in congregate 

or overcrowded settings.”302 However, even 

though the guidance recognized the risk in 

congregate settings, the guidance left until 

Phase 2 “group homes . . . for people with 

96 National Council on Disability
disabilities, including serious mental illness, 

developmental and intellectual disabilities, and 

physical disabilities or in recovery, and staff 

who work in such settings” despite similarities 

in transmission rates and population risks 

across these congregate settings.303 Moreover, 

the guidance did not detail whether staff 

or residents should be prioritized first, how 

residents with different disabilities in different 

types of CCFs should be prioritized based on 

underlying risk, or how facilities could ensure 

the continued availability of vaccines for new 

residents. In response, many states vaccinated 

CCF staff much earlier than residents, similarly 

to the manner in which some states made 

COVID-19 testing available more frequently to 

CCF staff than residents.304

The Biden Administration Brought 

New Focus to People with 

Disabilities in CCFs, Though Many 

Steps Came Late and Others Remain 

Undone

President Biden issued a National Strategy 

for the COVID-19 Response and Pandemic 

Preparedness immediately upon assuming office. 

Among other things, it included a commitment 

to make “significant investments in home and 

community based services,” and, through HHS, 

CMS, and ACL, identify “opportunities and funding 

mechanisms to provide greater support for 

individuals receiving home and community based 

services, with particular attention to people with 

disabilities and the home care workforce crisis.”305

On January 21, 2021, President Biden 

issued an Executive Order directing the federal 

government to take a more active role in 

providing assistance to CCFs.306 The Executive 

Order requires the Secretaries of Defense, 

HHS, and Veterans Affairs to “provide targeted 

surge assistance to critical care and LTCFs, 

including nursing homes and skilled nursing 

facilities, assisted living facilities, intermediate 

care facilities for individuals with disabilities, and 

residential treatment centers in their efforts to 

combat the spread of COVID-19.”307 Since then, 

CDC has updated its guidance for LTCFs to 

include procedures for handling PPE, visitation, 

and physical distancing with “a description of 

quarantine recommendations including resident 

placement, recommended PPE, and duration 

of quarantine,”308 and updated its guidance for 

individuals with disabilities in group homes,309 but 

neither recommends facilitating transitions out of 

these facilities or describes strategies to do so.

HHS’s Office for Civil Rights issued a guidance 

prohibiting discrimination in COVID-19 vaccination 

programs on April 13, 2021,310 and around the 

same time, the Administration for Community 

Living issued strategies for improving equitable 

vaccine access for older adults and people with 

disabilities.311 These guidance documents were 

helpful but did not specifically address individuals 

in CCFs.

The Biden Administration engaged in 

significant interagency coordination to identify 

ways to pair services and housing resources to 

promote transitions and diversions of people 

with disabilities and older adults from institutions, 

particularly in light of the virus transmission that 

occurred and could recur in the future.

The federal government first addressed legal 

requirements to transition individuals from CCFs 

during COVID-19 almost a year into the pandemic. 

On December 17, 2020, CMS issued guidance 

stating that community service providers “should 

The Impact of COVID-19 on People with Disabilities 97
have direct access to service recipients prior to 

discharge;” that facilities should use telehealth 

strategies to engage outside providers in 

transition planning, developing relationships, and 

facilitating transition if visitation restrictions are in 

place for these providers; 

and that institutional 

settings should work 

together with community 

providers to ensure 

that individuals who no 

longer need or want 

facility-based care can 

transition to the community, including through 

the use of virtual technology for team meetings, 

client engagement, service planning, and 

apartment walk-throughs.312 On February 10, 

2021, CMS issued guidance noting that federal 

disability rights laws may require facilities to 

permit entry of support staff to facilitate an 

individual’s transition from an institutional setting 

to the community.313 The guidance, later updated 

on June 3, 2021, says that under federal law, 

“facilities may be required to permit entry of a 

designated support person to meet an individual’s 

disability-related needs, including, as may be 

appropriate in some 

cases, supporting an 

individual’s transition 

from an institutional 

setting into the 

community, and offering 

strategies as well for 

allowing safe outdoor visitation.”314 Despite CMS’s 

acknowledgment that visitation restrictions 

should not impede community providers from 

entering facilities to provide transition support, 

the guidance could be clearer that these providers 

should be considered “essential care providers.” 

The guidance also could have clarified what 

newly available funding sources could help fund 

transition-related costs.

On April 2, 2021, DOJ issued a statement 

recommending 

“services in homeand community-based 

settings instead of 

in long-term care 

facilities” and requiring 

“governments” to 

“comply with the ADA 

and Section 504.”315 Moreover, the guidance 

acknowledged that these HCBS services 

“can satisfy the ADA integration mandate by 

preventing unnecessary institutionalization . . . 

[and] also reduce COVID-19 risk.”316

Though the spring 2021 guidance documents 

from CMS and DOJ were necessary, they came 

too late; the worst of the pandemic had already 

occurred and had taken the lives of thousands 

of CCF residents during the previous year. 

Furthermore, by the time they were released, 

the United States had made vaccines widely 

available to this population. An earlier investment 

in infrastructure and 

guidance to move 

people out of these 

high-density settings and 

requiring compliance 

with Olmstead during 

the pandemic could have 

prevented mass casualties and infection.

Moreover, the federal government has not 

fully addressed the need for federal guidance to 

facilitate transitions and diversions from CCFs. 

While rates of COVID-19 transmission in CCFs 

Despite CMS’s acknowledgment ..

the guidance could be clearer 

that these providers should 

be considered “essential care 

providers.

[T]he federal government has not 

fully addressed the need for federal 

guidance to facilitate transitions 

and diversions from CCFs

98 National Council on Disability
have dramatically decreased, such guidance is 

important for the future. No federal guidance 

has detailed with specificity how HCBS could 

facilitate transitions and diversions of individuals 

from CCFs during a pandemic, nor how 

states could reduce census within facilities by 

enhancing HCBS, despite similar CDC guidance 

recommending release of individuals from 

correctional and detention facilities to prevent 

intrafacility transmission.317 Guidance could have 

detailed how providers could use telehealth for 

transition services and could highlight temporary 

discharge options like motels or other housing.

For example, to speed 

up transitions amid staff 

and provider shortages, 

CMS guidance could 

have identified strategies 

for discharging individuals 

with disabilities from 

CCFs to temporary 

housing—possibly with a 

lower but critical level of 

support initially, affording 

additional time to secure 

permanent housing and full supportive services. 

Guidance could have considered subsidies 

or financial stipends for friends and family of 

persons in CCFs to provide short-term housing 

and care while permanent supports were found. 

It could also have given states a framework for 

innovative ways to use emergency funds and 

existing resources to fund other short-term, 

emergency housing like hotel stays, so people 

could be safely moved from CCFs while providers 

were given a window to find stable housing.

The full extent of vaccinations among CCF 

residents is not known due to inadequate data 

collection for facilities other than LTCFs. Around 

3 million people in LTCFs were fully vaccinated, 

but, even so, the federal program bringing 

vaccines to nursing homes missed around half of 

the staff working within those facilities, according 

to a March 2021 report.318 More data is needed to 

understand where and how vaccines should have 

been prioritized differently.

On May 13, 2021, CMS issued an 

interim final rule requiring intermediate care 

facilities for individuals with intellectual and 

developmental disabilities, along with LTCFs, 

to offer residents and staff vaccinations and to 

collect and report data 

on these vaccinations to 

CDC.319 CMS solicited 

public comment on 

whether it would be 

feasible to impose 

similar requirements on 

other facilities including 

psychiatric hospitals, 

psychiatric residential 

treatment facilities, 

forensic hospitals, adult 

foster care homes, group homes, assisted 

living facilities, supervised apartments, and 

inpatient hospice facilities. NCD believes that 

all of these facilities should be required to 

comply with these rules.

During future pandemics and national 

emergencies, guidance is needed at every 

step of the way for all types of CCFs, not just 

nursing homes and LTCFs. The guidance must 

detail how facilities can accelerate discharges 

and ensure diversion and how states can 

pay for those efforts—both by increasing the 

availability of funds and detailing ways in which 

During future pandemics and 

national emergencies, guidance is 

needed at every step of the way for 

all types of CCFs, not just nursing 

homes and LTCFs. The guidance

must detail how facilities can 

accelerate discharges and ensure 

diversion 

The Impact of COVID-19 on People with Disabilities 99
those funds can be used most efficiently to 

provide equitable care.

Financing Community Services 

and Housing to Enable Transitions 

from CCFs

Understanding the key funding sources 

available to expand community services and 

housing is critical to accelerating discharges and 

diversions from CCFs. Medicaid is the primary

payer of HCBS for people with disabilities. 

Key Medicaid authorities for financing these 

services include HCBS waiver services, the 

Medicaid rehabilitation option (which covers 

assertive community treatment, peer support 

services, mobile crisis, and other crisis services), 

personal care services, 

home health services, 

intensive case 

management, transition 

services, tenancy 

support services, and 

supported employment. 

The Medicaid “Money 

Follows the Person” program also funds HCBS 

for people with disabilities who have been 

institutionalized for at least 90 days, but states 

have had difficulty relying on it due to short 

reauthorization periods,320 and features of the 

program have made it largely unavailable to 

people with psychiatric disabilities.

HCBS services were already in short supply 

before the pandemic. For example, most states’ 

HCBS wait lists averaged around three years,321

and community mental health services were 

in similarly short supply. Additionally, the Trump 

Administration weakened its enforcement of 

the Medicaid HCBS “Settings Rule,” which 

is designed to ensure that scarce resources 

designated for HCBS are provided in integrated 

community settings, and not in segregated 

settings that isolate people.322 The Settings Rule 

has been important in expanding opportunities 

for individuals with disabilities to live, work, 

and receive services in integrated settings and 

thus in reducing some COVID-19 risks. CMS’s 

enforcement in recent years has been less 

assertive, however, and its new policies have 

weakened the impact of the rule. In 2017, CMS 

extended the deadline for states to come into 

full compliance with the rule by three years, 

from March 2019 to March 2022,323 and in 2020 

CMS extended the timeline by another year 

due to COVID-related issues.324 In 2019, CMS 

issued guidance making a number of changes 

allowing states to avoid 

federal scrutiny of 

whether federal HCBS 

funds are appropriately 

used for settings that 

are presumptively 

institutional in nature but 

for which states seek 

HCBS funding.325 Had the Settings Rule been 

in full effect during the pandemic, persons with 

disabilities may have had more opportunities to 

secure community-based services to transition 

from or avoid placement in a CCF. The Trump 

guidance should be reversed, and CMS should 

take a more active role in scrutinizing which 

settings meet the requirements of the rule.

As described above, the pandemic’s impact 

on community service providers made HCBS 

services even more difficult to access. In 

addition to these services, housing subsidies 

are critical to ensure that people with disabilities 

can transition or be diverted from CCFs. A lack 

of housing is often the biggest barrier to 

Medicaid is the primary payer of 

HCBS for people with disabilities

[A]s of July 2021, there are more 

than 850,000 people with IDD/DD on 

waiting lists for HCBS services

100 National Council on Disability
transition. Many states have programs providing 

state rental subsidies as part of supported 

housing. In addition, federal housing funding 

streams are often used, including HUD’s 

Housing Choice Vouchers (formerly known as 

“Section 8” housing), “Section 811” supportive 

housing vouchers for people with disabilities, 

“Mainstream vouchers” for nonelderly people 

with disabilities, and Continuum of Care 

subsidies to house homeless individuals. The 

availability of both federal and state rental 

subsidies falls far short of the need. As a result, 

there are nearly 400,000 people with disabilities 

living on the streets, in shelters, and another 

200,000–300,000 people with disabilities in 

institutional settings.326 Further, as of July 2021, 

there are more than 

850,000 people with 

IDD/DD on waiting lists 

for HCBS services.327

According to one 

report, “federal rental 

subsidy programs administered by the U.S. 

Department of Housing and Urban Development 

(HUD) currently reach only 35 of every 100 

extremely low-income (ELI) households. . . . 

This shortfall translates into long waiting 

lists at Public Housing Agencies (PHAs) and 

affordable housing developments, and a critical 

shortage of permanent supportive housing 

(PSH) opportunities for people with significant 

disabilities who have SSI-level incomes.”328

Congress has made available new funding 

available for HCBS and housing in its COVID-19 

relief legislation, most significantly in the 

American Rescue Plan Act (ARPA).329 However, it 

is incumbent upon state and local governments 

to take advantage of these funds to expand 

their ability to transition and divert people with 

disabilities from CCFs. States also have the 

ability to use certain Medicaid flexibilities during 

an emergency to cover services that would 

otherwise not be reimbursable—including 

“Appendix K” waivers for Medicaid HCBS 

waivers as well as waivers permitted under 

Section 1135 of the Social Security Act.

Enhanced Medicaid Funding for HCBS

Increased funding for HCBS is critical to speed up 

the rate of transitions out of congregate settings 

for people with disabilities. HCBS are health 

services “designed to enable people to stay in 

their homes, rather than moving to a facility for 

care.”330 For community providers who were 

hit hard by the pandemic including with staff 

shortages, expenses of 

acquiring PPE, telehealth 

equipment, vehicle 

shields, and other 

necessary supplies, 

additional funding that 

could be used to provide HCBS and cover such 

supplies and extra staffing was key to shore up 

their ability to function and to expand. ARPA 

provided $12.7 billion to states for HCBS—

including home healthcare, personal care, 

habilitation services, supported employment, and 

rehabilitative services, among other services. 

Congress provided a 10 percent increase in federal 

Medicaid reimbursement for these services for 

one year, from April 2021 through March 2022. If 

states choose to use this newly available funding, 

they must use it to supplement current HCBS 

spending.331 This ensures that states do not 

reduce their financial investments in HCBS as they 

receive an influx of federal funds; the funds must 

be used to add to the state’s existing investments. 

The Act also provided enhanced federal Medicaid 

A lack of housing is often the 

biggest barrier to transition [to the 

community]

The Impact of COVID-19 on People with Disabilities 101
reimbursement for mobile crisis services for a 

three-year period beginning in April 2022.

Congress also extended the Money Follows 

the Person program for three years in the 

Consolidated Appropriations Act in December 

2020.332 Money Follows the Person “provides 

states with enhanced federal matching funds 

for services and supports to help . . . people 

with disabilities move from institutions to the 

community” and “was designed to . . . increase 

the use of home and community-based, rather 

than institutional, long-term care services.”333

Using Medicaid “Appendix K” and 

Section 1135 Waivers to Cover Family 

Caregiver Support

Many states have used “Appendix K” waivers, 

which may be used to modify Medicaid HCBS 

waivers during an emergency, to cover services 

that they ordinarily 

would not cover. 

Appendix K waivers, 

which must be approved 

by HHS, enable 

states to “pay legally responsible relatives to 

provide care that is ‘extraordinary’” and that is 

“necessary in order to prevent the beneficiary 

from being institutionalized.”334 For example, 

states could expand eligibility for community 

services by increasing flexibility for payment to 

family caregivers and by temporarily modifying 

minimum provider qualifications. States could 

also use these waivers to increase the amount 

they currently pay home caregivers and to 

provide them with PPE. As of April 19, 2021, 

39 states were using Appendix K waivers to 

pay family caregivers.335 The use of Appendix K 

has helped to prevent the transmission of 

COVID-19.

Likewise, “Section 1135” waivers can be 

used during emergencies to temporarily halt 

certain requirements for providers of home 

healthcare. As of April 19, 2021, 14 states were 

using Section 1135 waivers to pay for personal 

care provided by legally responsible family 

caregivers.336 By keeping family members 

together and out of congregate settings, the 

use of Section 1135 to pay for family caregivers, 

like Appendix K, has helped to prevent 

transmission of COVID-19.

One flexibility that CMS commonly granted in 

Section 1135 waivers is a waiver of preadmission 

screening (PASRR) requirements to ensure 

that individuals with psychiatric and intellectual 

disabilities are not inappropriately admitted to 

nursing homes. As it is, these requirements have 

had limited effectiveness in stopping nursing 

home admissions of individuals who could live in 

more integrated settings, 

and waiving them only 

increases needless 

institutionalization 

and exposes more 

people with disabilities to risks of coronavirus 

transmission.

FEMA Reimbursement for 

Emergency Housing

The Federal Emergency Management Agency 

(FEMA) quickly became a leading source of 

funding for housing assistance grants. The main 

source of FEMA funding for housing relief is 

Category B Public Assistance under the Stafford 

Act.337 The CARES Act added supplementary 

funding to Category B Public Assistance and 

enhanced Emergency Food and Shelter Program 

grants. By an Executive Order dated February 2, 

2021, President Biden increased the federal 

As of April 19, 2021, 39 states were 

using Appendix K waivers to pay 

family caregivers

102 National Council on Disability
match to 100 percent of approved expenses 

(up from the usual 75 percent rate) for work 

through September 30, 2021.338 FEMA Category 

B grants can be made to states, territories, 

tribes, and local governments if the area is 

under a public health order that recommends 

noncongregate housing to address COVID-19 in 

a target population. According to FEMA, target 

populations may include, for example, people 

who test positive for COVID-19 but do not require 

hospitalization, people who have been exposed 

to COVID-19, and individuals who are high-risk 

and require physical distancing as a precautionary 

measure.339 Localities 

may then use Category B 

funds to reimburse the 

cost of renting hotels, 

motels, and “other 

forms of non-congregate 

sheltering” to house 

individuals at risk of 

homelessness.340

At least four states—

California, Pennsylvania, 

Connecticut, and North 

Carolina—received 

approval for FEMA Category B funds to provide 

noncongregate housing to a target population 

during the pandemic, which could include, 

“those who test positive for COVID-19 who do 

not require hospitalization but need isolation 

(including those exiting from hospitals); those 

who have been exposed to COVID-19 who do 

not require hospitalization; and asymptomatic 

high-risk individuals needing social distancing as 

a precautionary measure, such as people over 

65 or with certain underlying health conditions 

(respiratory, compromised immunities, chronic 

disease).”341 California and Pennsylvania applied 

for and were granted funds for noncongregate 

sheltering for the groups outlined in FEMA’s 

target populations.342 North Carolina expanded 

the target population to also include “those 

whose living situation makes them unable to 

adhere to social distancing guidance.”343 Finally, 

Connecticut’s approved application broadly 

extended to cover noncongregate housing for 

individuals currently living in “at-risk facilities 

such as group homes, nursing homes, long-term 

care sites, and alternative care facilities” and 

“homeless individuals in congregate shelters.”344

In the fall of 2020, independent living centers 

reported that FEMA 

funds were difficult 

to access during the 

pandemic, sometimes 

because they were 

allocated to other 

entities early on and also 

because independent 

living centers would have 

to contract with a local 

agency or a county than 

directly with a state, 

to access Category 

B funds covering the areas in which they 

worked.345 As an example, Roads to Freedom, 

the Center for Independent Living of North 

Central Pennsylvania, entered into an agreement 

with the county to receive FEMA Category B 

funds to transition people with disabilities from 

congregate settings. FEMA acknowledged 

that these funds could be used to transition 

people with disabilities from congregate 

settings to noncongregate settings about seven 

months later.

While Category B funds offer an important 

temporary solution for moving people out 

Category B funds offer an important 

temporary solution for moving 

people out of CCFs and into 

supported housing quickly while 

more permanent housing is found, 

but recipients cannot use the funds 

for the wrap-around services that 

individuals in temporary housing 

need

The Impact of COVID-19 on People with Disabilities 103
of CCFs and into supported housing quickly 

while more permanent housing is found, but 

recipients cannot use the funds for the wraparound services that individuals in temporary 

housing need. For example, FEMA explicitly 

disallows subsidies for case management and 

mental health counseling, and states must 

apply separately for sheltering subsidies and 

crisis counseling funds. Additionally, Category 

B funds provide only for temporary housing. 

Other federal subsidies are needed to ensure 

permanent, supportive housing for individuals 

with disabilities.

The CARES Act also provided $200 million to 

FEMA’s Emergency Food 

and Shelter Program 

(EFSG), which is not 

contingent on a local 

disaster declaration.346

Emergency Food and 

Shelter Program grants 

reimbursed 30-day 

stays in noncongregate 

housing and sheltering 

transportation costs.

New Funding for Housing

Congress also appropriated significant new 

funding for federal housing programs in its 

COVID-19 relief packages. Most of these funds 

are targeted to individuals who are homeless or 

at risk of homelessness, but some may be used 

for people with disabilities being discharged or 

diverted from CCFs to the extent that they meet 

the criteria for the funds.

For example, ARPA included $5 billion 

for emergency vouchers that can be used 

by people who are homeless or at risk of 

homelessness, recently homeless, or fleeing 

domestic violence. These vouchers should 

be able to be used by people with disabilities 

discharged from CCFs who do not have access 

to stable housing.

CARES Act provided nearly $4 billion in 

new funding for HUD Emergency Solutions 

Grants (ESG).347 These grants, authorized by 

the McKinney-Vento Homeless Assistance Act, 

provide funding to cities, counties, states, and 

territories to provide services to individuals 

at risk of homelessness (typically through 

subgrants to nonprofit organizations).348

They can be used for individuals exiting an 

institution who meet 

certain qualifications—

having income below 

30 percent of the median 

family income and having 

spent 90 days or less in 

an institution and lived 

in an emergency shelter 

or were homeless 

prior to entering 

the facility.349 Upon 

discharge, qualifying 

individuals leaving institutions are eligible for 

short-term rental assistance as well as housing 

relocation and stabilization. Funds can only 

be spent “to the extent that the assistance 

is necessary to help the program participant 

regain stability in [their] current permanent 

housing or move into other permanent housing 

and achieve stability in that housing.”350

The only housing funding targeted directly 

for people with disabilities in the COVID-19 

relief legislation to date has been $15 million for 

Section 811 supportive housing and $65 million 

The only housing funding targeted 

directly for people with disabilities 

in the COVID-19 relief legislation 

to date has been $15 million for 

Section 811 supportive housing 

and $65 million for the Housing 

Opportunities for Persons with AIDS 

(HOPWA) program

104 National Council on Disability
for the Housing Opportunities for Persons with 

AIDS (HOPWA) program, both included in the 

CARES Act. However, Section 811 funds did 

not include any requirement to provide new 

housing units, but only 

to ensure maintenance 

of operations of existing 

Section 811 units 

during the pandemic. 

The HOPWA funds can 

be used to maintain 

existing housing 

assistance or to respond 

to COVID-19, including 

isolation and relocation 

expenses to protect 

people living with HIV/

AIDS,351 but most HOPWA funds tend to serve 

individuals who are not coming out of CCFs.

Since the vast majority of funding that can 

be used for new housing 

subsidies is targeted 

at people who are 

homeless or at risk of 

homelessness, guidance 

indicating that these 

funds can be used for 

purposes of transitioning 

eligible individuals 

with disabilities out of 

CCFs is important to 

ensure that some of 

this funding is directed 

to that purpose. 

Likewise, in any future health crisis, legislation 

establishing emergency funding should make 

clear that funds may be used for transition 

purposes.

Forthcoming Infrastructure Investments

On March 31, 2021, the Biden Administration 

released its $2.3 trillion infrastructure plan, 

the American Jobs Plan.352 Among the plan’s 

provisions are a proposal 

to spend $400 billion 

to shore up the HCBS 

workforce and expand 

HCBS services for 

people with disabilities 

and older adults, as well 

as a proposal to further 

extend the Money 

Follows the Person 

program. Congressional 

enactment of new 

funding for HCBS would 

be an opportunity to extend the American Rescue 

Plan’s important incentive for expansion of HCBS 

into the future. On June 24, 2021, the Better 

Care Better Jobs Act 

was introduced in the 

House and Senate.353

This legislation would 

make states eligible for 

a 10 percent increase 

in federal Medicaid 

reimbursement for 

HCBS services if they 

take certain steps to 

expand HCBS services, 

strengthen the HCBS 

workforce including by 

raising HCBS payment 

rates and ensuring that rate increases are 

passed through to direct care workers, and 

demonstrating improved availability of services 

and competitive wages for workers. The 

[T]he Better Care Better Jobs Act 

would make states eligible for a 

10 percent increase in federal Medicaid 

reimbursement for HCBS services 

if they take certain steps to expand 

HCBS services, strengthen the HCBS 

workforce ... , and demonstrati

improved availability of services and 

competitive wages for workers

CMS routinely collects data on 

nursing homes and therefore had 

built-in channels to begin requiring 

nursing homes to track and report 

on incidences of COVID-19 in their 

facilities; but neither CMS, the 

CDC, nor any other federal agency 

required reporting of this data in 

other types of CCFs, including CDC’s 

COVID-19 Data Tracker

The Impact of COVID-19 on People with Disabilities 105
legislation would also make the Money Follows 

the Person program permanent.

Better Collection and Analysis of the 

Impact of COVID-19 on People Living 

and Working in Congregate Care 

Facilities

Data capturing the spread and transmission 

of COVID-19 in CCFs outside of LTCFs (and, 

especially, nursing homes) is sparse. CMS 

routinely collects data on nursing homes and 

therefore had built-in channels to begin requiring 

nursing homes to track and report on incidences 

of COVID-19 in their facilities; but neither CMS, 

the CDC, nor any other federal agency required 

reporting of this data in other types of CCFs, 

including CDC’s COVID-19 Data Tracker.354 This left 

gaps in critical information and an unclear picture 

of the impact on people with disabilities living in 

other CCF’s, such as group homes and assisted 

living facilities.

To track the spread of the pandemic in 

CCFs, advocates had to piece together data 

from news reports on specific facilities, 

state databases and reports (where they 

existed), narratives from providers and 

caregivers, and private insurance data. The 

lack of federal data collection efforts stymied 

efforts to monitor compliance with federal 

disability protections and intensified civil 

rights concerns. Motivated by these grave 

consequences, in every Congressional 

negotiation on COVID-related packages, 

advocates pushed for federal collection of 

data to track the impact of COVID-19 on 

residents and staff of CCFs and to compare it 

to the impact on similarly situated individuals 

living at home. Such data requests included, 

for example:

Data Requests in Federal COVID 

Legislation

■ Numbers of tests and rates of testing for 

COVID-19 of people with disabilities and staff 

in nursing homes, psychiatric facilities, facilities 

for people with intellectual and developmental 

disabilities, board and care homes, group 

homes, and other congregate facilities for 

people with disabilities in supported housing 

and other community settings.

■ Numbers of people with disabilities and 

staff testing positive for COVID-19 and rates 

of positive tests in each of these settings.

■ Numbers of COVID-19–related 

hospitalizations of people with disabilities 

and staff in each of these settings.

■ Numbers of COVID-19–related deaths and 

death rates among people with disabilities 

and staff in each of these settings.

■ Numbers of people who have recovered 

from COVID-19 and recovery rates among 

people with disabilities and staff in each of 

these settings.

■ Numbers of people who have been 

transferred from community settings to 

institutional settings as a result of COVID-19.

■ Numbers of people with disabilities who 

have been discharged from institutions as a 

result of COVID-19.

■ Analysis of the data to identify trends and 

factors such as facility type, disability type, 

location or geographical area, or other 

factors that correlate with rates of testing, 

positive cases, or outcomes.”355

106 National Council on Disability
Though the House-passed Health and 

Economic Recovery Omnibus Emergency 

Solutions (HEROES) Act included a provision 

requiring the Secretary to work with covered 

agencies to support the modernization of data 

collection to increase data related to “health 

inequities, such as racial, ethnic, socioeconomic, 

sex, gender, and disability disparities,” the bill did 

not ultimately become law.356

The primary provision in the various pieces 

of COVID-19 relief legislation that could be 

used to require expanded data collection and 

analysis concerning people with disabilities 

is in the Paycheck Protection and Healthcare 

Enhancement Act. This Act included a provision 

requiring HHS to report incidences of COVID-19 

diagnoses, hospitalizations, and deaths, broken 

down by several factors including race, ethnicity, 

age, sex, region, and “other relevant factors,” 

but did not specifically require reporting by 

disability.357 HHS should issue guidance indicating 

the “other relevant factors” provision includes 

disability, and data should be separated by 

housing status, including community care. 

Data is needed on community care to compare 

the difference in outcomes for people who 

experienced the pandemic in congregate settings 

and those that were able to receive care at home.

ARPA included provisions calling for the 

Secretary, acting through the Director of CDC, 

to provide funds to be used for data related to 

vaccine distribution and vaccinations, and funds 

for activities to support data collection systems. 

While the provisions are not currently disabilityspecific, these provisions might be a tool to 

track vaccination data for people with disabilities 

in and out of CCFs.358 Further, as noted above, 

CMS issued an interim final rule requiring 

nursing facilities and intermediate care facilities 

for people with intellectual and developmental 

disabilities to collect and report vaccination data 

for residents and staff.359

In January 2021, President Biden released the 

“National Strategy for the COVID-19 Response 

and Pandemic Preparedness,” which included a 

call for increased data collection.360 The strategy 

recognized that “the fragmented and limited 

availability of data by race, ethnicity, geography, 

disability and other demographic variables delays 

recognition of risk and a targeted response,” and 

called upon HHS to “optimize data collection 

from public and private entities to increase 

the availability of data by . . . disability . . . and 

other demographic variables, as feasible,” and 

established that CMS “will work to report 

Medicare and Medicaid data on COVID-19 testing, 

cases, vaccinations, hospitalizations, therapeutic 

utilization, and deaths by . . . disability and 

other sociodemographic factors.’361 Additionally, 

President Biden issued an Executive Order 

directing federal agencies to “expand their data 

infrastructure to increase collection and reporting 

of health data for high risk populations.”362

Summary of Findings

■ COVID-19 exposed many of the worst 

vulnerabilities of congregate care systems 

and emphasized the weaknesses in existing 

efforts to move individuals out of these 

settings. In the face of the century’s worst 

public health crisis, states had dramatically 

less capacity to fund and implement legally 

required diversion and transition initiatives. 

As a result, people with disabilities residing 

in congregate settings experienced 

disproportionate rates of severe illness and 

death due to COVID-19.

The Impact of COVID-19 on People with Disabilities 107
■ Without adequate data to track the rates of 

transmission, testing, morbidity, mortality, 

and vaccination in each category of CCF, 

it is hard to say whether the federal 

government’s prioritization of older adults 

and disabled persons, facility adherence 

to visitation restrictions, and provider 

hesitancy to move people out of congregate 

settings had a positive net effect on 

controlling the spread of COVID-19 in 

congregate settings (as claimed), despite 

the negative impact on transitions and 

diversion and the isolation that people 

experienced in these facilities. More 

information is needed to understand the 

full experiences that people with disabilities 

had during the pandemic. Moreover, 

CDC and CMS must build systems and 

capacities to track future public health 

emergencies in CCFs.

■ Two positive gains from the pandemic 

include added investments in HCBS and 

housing for people with disabilities—

including enhanced Medicaid reimbursement 

for HCBS, Medicaid flexibilities to 

reimburse family caregivers, a three-year 

extension of the Money Follows the Person 

demonstration project, and FEMA funding for 

emergency housing. Yet, it is not clear how 

fully states used these new funding streams, 

and if they did not, whether such oversight 

was intentional or a result of limited guidance 

and/or a lack of awareness of potential 

uses. Even with these positive steps, more 

investments are needed to expand Medicaid 

HCBS services, make permanent the Money 

Follows the Person program, strengthen 

enforcement and interpretations of the HCBS 

Settings Rule, and to expand the availability 

and affordability of housing units.

Recommendations

To ensure that diversions and transitions from 

CCFs continue prior to a future health crisis or 

pandemic, and to ensure quality standards of 

care for those who prefer or need to reside in 

CCFs, NCD recommends:

Recommendations for Federal Agencies

CMS, ACL, SAMHSA, HUD, FEMA, and DOJ should:

■ Develop a multi-agency national strategy to mitigate the risks of COVID-19 transmission 

in CCFs and address the civil rights concerns that continue to impact the lives of people 

with disabilities in CCFs. The agencies should clarify how community services can be 

paired with housing resources to ensure that people with disabilities have the opportunity 

to receive services in the most integrated setting and avoid needless risk of infection and 

death. They should also issue guidance identifying strategies and resources available to 

state and local governments to facilitate transitions and diversions from CCFs, flexibilities 

108 National Council on Disability
that may be used, and how these resources factor into public entities’ Olmstead

obligations in future crises; for example:

● CMS should issue guidance explaining how states can combine HCBS funding with 

housing resources to facilitate transitions and diversions from CCFs; and ensure that 

temporary funds are available in future emergency settings with an explicit directive to 

transition people with disabilities out of CCFs.

● CMS should encourage states to use Appendix K and Section 1135 waivers to support 

family caregivers.

● CMS should rescind Trump-era guidance that weakens the interpretation of the HCBS 

Settings Rule and ensure that HCBS funding is used to fund services in integrated 

community settings.

● CMS should rescind its approval of PASRR waivers and HHS should prohibit their use in 

any future health emergency except under very limited circumstances.

● HUD should issue guidance clarifying that federal housing funds made available through 

ARPA and the CARES Act, as well as Emergency Solutions Grant funding more generally, 

may be used for individuals with disabilities transitioning or being diverted from CCFs.

● HUD should increase the availability of additional housing vouchers so states can curtail 

lengthy waiting lists, increase housing options—including accessible units—and speed 

up the process of transitioning people with disabilities into the community.

● FEMA should issue guidance clarifying that Category B funds and the Individuals and 

Households Program may be used for individuals with disabilities transitioning out of CCFs.

● DOJ should issue guidance concerning public entities’ Olmstead obligations and how 

those entities should take advantage of specific federal resources to facilitate transition 

and diversion from CCFs, including emergency resources. The guidance should clarify 

that Olmstead and the ADA’s integration mandate require that transitions and diversion 

from CCFs continue even during pandemics and other emergencies and offering 

strategies and examples of how that can be accomplished.

■ CDC and CMS should work together to emphasize census reduction in all CCFs as an 

infection control strategy. Accordingly,

● CDC should expand its guidance beyond LTCFs to include all CCFs and emphasize 

that reducing the census of CCFs through accelerating discharges and diversions as a 

Recommendations for Federal Agencies: continued

(continued)

The Impact of COVID-19 on People with Disabilities 109
Recommendations for Federal Agencies: continued

critical strategy to ensure that the physical distancing required for infection control can 

be effectively done in CCFs. CMS guidance should explain ways to reduce the level of 

services required for discharge when needed to speed up transitions amid staff and 

provider shortages during an emergency. In many cases, minimally necessary services 

and supports could, in an emergency setting, simply include medication and case 

management.

■ HHS should improve disability data collection: The Paycheck Protection and Healthcare 

Enhancement Act required HHS to report incidences of COVID-19 diagnoses, 

hospitalizations, and deaths, broken down by several factors including “other relevant 

factors,” but not specifically disability.363 For data collection purposes, the Secretary of 

HHS should define “other relevant factors” to include data points that capture people 

with disabilities in CCFs. Future legislation should also require the collection of this data 

for each type of congregate care setting as well as for individuals with disabilities living 

in their own homes (specific data recommendations for Congress are addressed in the 

recommendations in chapter 1). Further, the CDC’s COVID-19 Data Tracker should release 

COVID-19 data separated by housing status—for each type of CCF and for individuals who 

live independently in the community.364

■ CMS should prioritize all CCFs to receive equipment such as test kits and proper PPE 

from federal, state, and local governments that is necessary to follow CDC guidelines in 

any similar health emergency. CMS should recognize and clarify that community providers 

conducting in-reach transition support to facility residents are “essential care providers,” 

not “visitors,” and should not be restricted from entering facilities during future pandemics 

or crises. All CCFs should receive priority designation for vaccine allocation. Federal and 

state investments to expand telehealth infrastructure to ensure continuity of care are 

likewise needed.

■ FEMA should issue guidance to regional administrators reiterating their ability to approve 

broader eligibility definitions for sheltering-related Public Assistance reimbursements and 

to state governments explaining how they can access upfront FEMA Public Assistance 

payments in line with President Biden’s January 21 executive order. It should:

● Expand Reimbursement to Cover Expenses for Supportive Services and Personal 

Assistance Services (PAS) To Ensure Accessibility: Supportive services can be necessary 

to ensure that people experiencing homelessness, residents of CCFs, and other 

individuals with disabilities have access to noncongregate sheltering. To ensure greater 

110 National Council on Disability
access to the Public Assistance program, FEMA should expand the types of expenses 

eligible for reimbursement to include supportive services and encourage states and 

localities to provide supportive services alongside noncongregate shelter.

● Allow Independent Living Centers and Homeless Service Organizations to Apply 

for and Receive Direct Public Assistance Reimbursements: Currently, FEMA allows 

Public Assistance program reimbursements to be applied for and received by PNPs. 

The standing definition of PNPs, however, often exclude facilities such as independent 

living centers, homeless service centers, and similar nonprofits that operate in an open 

and public manner to ensure that certain populations have the services they need to 

survive. FEMA must issue guidance expanding the definition of PNP to include these 

organizations, ensuring they can continue operating after a disaster—including the 

current pandemic.

Recommendations for Federal Agencies: continued

Recommendations for States

■ State Medicaid agencies should expand Medicaid HCBS services including through 

taking advantage of new HCBS funding made available through ARPA and use Appendix K 

and Section 1135 waivers to support family caregivers.

■ State housing authorities and disability services agencies should support the expansion 

of available housing to enable people with disabilities, including by increasing requests 

for federal housing assistance through HUD programs and targeting housing resources to 

people with disabilities, as well as expanding the use of state housing subsidy programs to 

support people with disabilities.

■ States

● Should ensure that requests for FEMA emergency housing assistance include the needs 

of people with disabilities to move from congregate settings from CCFs.

● Should collect and make public, data concerning the numbers and rates of infections, 

hospitalizations, and deaths from COVID-19 or other viruses among residents and staff of 

all CCFs.

The Impact of COVID-19 on People with Disabilities 111
112 National Council on Disability
Chapter 3: The Direct Care Workforce

Overview of Direct Care Workforce

T he direct care workforce, including 

personal care assistants, home health 

aides, and nursing assistants, is critical 

to the independence and well-being of any 

person with long-term care needs. Similarly, 

unpaid family caregivers assist family and friends 

who have chronic or other health conditions, 

functional limitations, or disabilities, allowing 

them to remain living at home and, for some, 

avoid institutionalization 

in nursing homes. As the 

coronavirus pandemic 

spread across the 

United States, direct 

care workers, primarily 

women and people 

of color, continued to 

shoulder responsibility for providing essential 

care and assistance for people with disabilities 

and older people. Yet they often received little 

or no training on the risks of COVID-19 and 

were not provided with adequate coronavirus 

testing or PPE and supplies that could shield 

them from infection and death.365 Moreover, for 

these workers, the pandemic laid bare other 

long-standing inequities, including low wages, 

lack of comprehensive employee benefits such 

as paid family and medical leave, adequate 

unemployment insurance benefits, and hazard 

pay, and limited training and advancement 

opportunities.

Family caregivers met unforeseen challenges 

arising from COVID-19, including uncertainty 

about the likely impact of the disease on 

themselves and their families, the impact of 

shelter-at-home restrictions, lack of access to 

routine medical care, school, childcare, adult day 

program closures, potential job loss, income 

insecurity, and restricted 

access to prescriptions 

and home care supplies. 

The pandemic caused

hardship and loss, yet 

it brought the essential 

and undervalued role 

of direct care workers 

into the national conversation. It also shined 

a light on urgently needed reforms, including 

improvements in compensation, career 

development, care team integration, training, 

and improved employee benefits. Similarly, 

the pandemic heightened public awareness 

of the invaluable role family caregivers play in 

maintaining people with disabilities and older 

adults at home366 and focused on reforms that 

would support and enable unpaid workers to 

continue in these critical roles.367

The pandemic caused hardship 

and loss, yet it brought the essential 

and undervalued role of direct 

care workers into the national 

conversation

The Impact of COVID-19 on People with Disabilities 113
Direct Care Workforce and Family 

Caregiver Characteristics

An estimated 4.6 million individuals make up the 

direct care workforce in the United States, with 

a subset of more than 2.4 million who provide 

home care for people with disabilities and older 

individuals. An estimated 1 million home care 

workers are employed directly by people with 

disabilities and older people who receive services 

through publicly funded, consumer-directed 

programs. Other workers are hired privately in 

the “gray market,” however, workforce data is 

not available for this group.368 The direct care 

workforce assists an estimated 17 million people 

with disabilities and older people living in the 

community who require help with daily activities. 

It also assists an additional 1.5 million people 

living in nursing homes and 1 million people living 

in residential care facilities such as assisted living 

facilities and group homes.369

DC workers include personal care assistants, 

home health aides, and nursing assistants. 

People who work with individuals with 

intellectual and developmental disabilities are 

referred to as direct support professionals. 

Personal care assistants typically assist people 

with disabilities living in community settings 

and homes of their own with Activities of Daily 

Living (ADLs) such as bathing, dressing, eating, 

and toileting, and Instrumental Activities of 

Daily Living (IADLs) such as shopping, preparing 

meals, housekeeping, and handling finances. 

Home health aides and nursing assistants who 

work in institutional and community settings are 

114 National Council on Disability
allowed to perform some clinical tasks, such as 

medication management, that some personal 

care assistants may not be allowed to carry out. 

An estimated 53 percent of direct care workers 

come into close, frequent contact with the 

individuals they assist, which placed them and 

the people with whom they worked at risk of 

contracting COVID-19 during the pandemic.370

The direct care workforce is comprised 

mostly of women (87 percent) and people of 

color (59 percent). Immigrants—noncitizens 

living in the United States, including lawful 

permanent residents, “nonimmigrants,”—such 

as visitors, students, and temporary workers, 

and undocumented immigrants—make up 

about 27 percent of the direct care workforce. 

The median age of the workforce is 45 years of 

age.371 The direct care workforce in the United 

States, especially home health and personal 

care assistants, is projected to grow 34 percent 

from 2019 to 2029, according to the Bureau of 

Labor Statistics, as the baby boom generation 

ages and demand for home health and personal 

care assistance increases.372 Even as millions 

of people with disabilities and older people rely 

on the care they provide, these undervalued 

and undercompensated workers were affected 

by structural racism, gender inequality, and 

anti-immigrant sentiments in the United 

States.373

Before the coronavirus pandemic, the 

workforce as a whole was subject to consistently 

low wages, challenging work conditions, and 

limited workplace protections and employee 

benefits.374 Because they earned a median 

hourly wage of only $11.57, nearly 20 percent of 

direct care workers lived in poverty, and more 

than 40 percent depended on public assistance, 

including Medicaid and the Children’s Health 

Insurance Program (CHIP).375 Sixteen percent 

did not have any form of health insurance.376

These factors also contributed to high job 

turnover.377 During the height of the pandemic, 

one study revealed that home care workers 

felt invisible and forgotten when it came to 

hazard pay, health insurance, paid leave, and 

lack of child care when schools were closed. 

Moreover, many direct care workers who lived in 

multigenerational households where most adults 

continued to work, often as essential employees, 

expressed fear of bringing the coronavirus 

home to their families.378 Other studies revealed 

that direct care workers in nursing homes and 

assisted living communities were statistically 

more likely than home care workers to report 

COVID-19–related workplace challenges including 

increased workload demands and understaffing. 

Thirty-seven percent of nursing home direct 

care workers and 33 percent of assisted living 

workers reported understaffing as a challenge, 

compared to 13 percent of workers in agencies 

that provide HCBS including home healthcare 

agencies.379 Staffing shortages placed additional 

pressure on already overburdened workers.

As the coronavirus spread, direct care 

workers continued to shoulder responsibility 

for providing essential care and assistance 

for people with disabilities and older people. 

Moreover, in light of the disproportionate impact 

of the virus on communities of color, direct 

care workers who were members of racial, 

ethnic, and immigrant groups also faced more 

significant health and economic risks during the 

pandemic.380 Long-standing healthcare inequities 

left them more likely to experience severe 

COVID-19 illness if they become infected. Yet 

they often received little or no training beyond 

narrowly focused COVID-19 safety measures and 

The Impact of COVID-19 on People with Disabilities 115
were not provided with adequate coronavirus 

testing or PPE and supplies that could shield 

them from infection and death. Moreover, they 

lacked employee benefits that could help them 

avoid a financial crisis if they contracted the 

virus, lost their jobs, chose to isolate to protect 

themselves or their families, or left jobs to care 

for their own family members.381 While we lacked 

accurate COVID-19 death rates for all direct care 

workers, high rates of nursing home staff and 

resident infection and death had been reported 

and are referenced in chapter 2 of this report.382

DC workers were acutely affected by the 

inadequacy of the federal response during 

the early days of the 

pandemic. COVID-19 

precipitated an 

extraordinary and 

widespread human 

rights and public 

health crisis in nursing 

facilities, but direct 

care workers caring for 

people with disabilities 

and older adults living in 

home- and community-based care settings also 

experienced threats to their jobs and difficulty 

protecting themselves and their clients from 

the danger of coronavirus infection and death. 

The most effective methods to avoid contracting 

the coronavirus—social distancing and working 

remotely from home—were not options for direct 

care workers whose jobs in nursing facilities and 

community-based settings required close and 

sometimes intimate contact with clients. Lack of 

PPE and training on its use, worker and client fear 

of infection, and personal, economic, and family 

demands and stress led to an estimated loss of 

232,000 homecare jobs during just the first three 

months of the pandemic in 2020.383 However, the 

fragmented systems that pay for and facilitate 

HCBS also could not generate a coordinated 

response as the pandemic swept across the 

country. And notably, the lack of accurate data 

on the prevalence of COVID-19 illness and death 

among home care workers and the people they 

cared for also made it impossible to understand 

with any accuracy the true scope of the national 

COVID-19 disaster. Even as some data was 

available on the devastating effects of COVID-19 

on people with intellectual and developmental 

disabilities, and states and the CDC reported 

nursing home infections, illness, and deaths for 

staff and residents, ageadjusted data was not 

available on COVID-19 

infections, illness, and 

death based on disability 

status alone or the 

combined characteristics 

of race, ethnicity, and 

disability status.384

Lack of this critical 

information meant that 

policy advocates had to base recommendations 

mostly on anecdotes and early qualitative 

research. A dearth of accurate occupational data 

on the direct care workforce also obscured a full 

understanding of COVID-19’s impact on these 

workers. Existing data did not consider the varied 

roles, job duties, work environments, and titles of 

direct care workers, which led to undercounting 

certain workers and excluding others entirely.385

A direct care workforce that makes a living 

wage, has access to comprehensive healthcare, 

appropriate employment protections, benefits, 

job security, and career track opportunities is 

a matter of racial, ethnic, and gender equity. 

[D]irect care workers caring 

for people with disabilities and 

older adults living in home- and 

community-based care settings also 

experienced threats to their jobs 

and difficulty protecting themselves 

and their clients from the danger of 

coronavirus infection and death

116 National Council on Disability
These employment rights also ensure that the 

disability community has consistent access to 

services and supports needed to maintain health 

and live full, independent lives. The pandemic 

created new and distinct employment and health 

threats and challenges for direct care workers in 

addition to those they were already experiencing. 

While these threats eased somewhat, especially 

for residents and staff of nursing facilities, as 

vaccinations and PPE became more readily 

available, longstanding inequities remained. Direct 

care workers and home care agencies providing 

HCBS still reported PPE shortages and barriers 

to being vaccinated. For the foreseeable future 

policymakers must continue to recognize that 

the direct care workforce is made up of essential 

workers who are eligible for free coronavirus 

testing and vaccinations, who must have sufficient 

PPE and training in PPE use and infection control. 

They must also recognize that these workers are 

entitled to living wages and employment benefits 

that incentivize continued employment in the field, 

especially in light of threats posed by COVID-19.

In addition to the paid direct care workforce, 

research suggested that more than 50 million 

caregivers are currently providing unpaid help for 

adults or children with disabilities in the United 

States.386 A family caregiver is generally defined 

as an adult family member or another individual 

who has a significant relationship with a person 

who has a chronic or other health condition, a 

functional limitation, or a disability. These caregivers 

represent all ages, racial and ethnic groups, and 

socioeconomic backgrounds. They assist with ADLs, 

IADLs, medication management, and emotional and 

other support for family members or close friends. 

Among people caring for adults, almost 90 percent 

care for an adult relative, while about 10 percent 

care for a friend or neighbor. As the U.S. population 

lives longer with more chronic and complex 

functional limitations and medical conditions, the 

prevalence of unpaid caregiving will increase.

Family caregivers provide care for people with 

long-term physical conditions and emotional, 

mental health, or memory problems, including 

dementia or Alzheimer’s. Recent studies 

suggested that not only are more people in 

the United States taking on unpaid caregiver 

roles; they also are caring for people who have 

increasingly complicated support requirements 

or medical needs. Even before COVID-19, 

some family caregivers reported experiencing 

emotional stress and short- and long-term 

financial consequences to devoting significant 

time to caregiving, and a decline in self-reported 

health status.387 Furthermore, studies reported 

that over 50 percent of family caregivers had jobs 

that pay hourly wages, including some direct care 

workers, suggesting that taking unpaid time off 

threatened their economic stability.388

The coronavirus pandemic added additional 

stress and uncertainty for family caregivers, 

many of whom experienced new and unforeseen 

challenges arising from COVID-19. After the 

pandemic began, millions of family caregivers were 

forced to shelter in place, and some had to take a 

leave from their jobs to care for family members. 

Many had little or no paid leave while they struggled 

to fill caregiving gaps for their family members with 

disabilities when scheduled workers contracted 

COVID-19 themselves or choose to stay home 

to avoid either contracting the virus or passing it 

on to clients and their families. Caregivers also 

encountered difficulties coordinating care for 

family members living in nursing homes and other 

facilities that closed to visitors.389 COVID-19 hit 

communities of color especially hard, and reports 

indicated that 16 percent of Latino and 13 percent 

The Impact of COVID-19 on People with Disabilities 117
of Black adults left their jobs to care for family 

members during the pandemic.390 Many of these 

individuals held low-paying jobs and lacked paid 

leave even as they needed to shelter in place to 

avoid contracting the virus or to care for a person 

with a disability or an older adult.391 Refining the 

focus even more to women of color, 28 percent 

of Latina women and 27 percent of Black women 

indicate that they have taken days off without pay 

or quit a job to care for either a child or an elderly 

relative, compared to 12 percent of white women 

and men of all ethnicities.392

Federal and State COVID-19 

Responses to Direct Care Workers

After the pandemic began, Congress and state 

legislatures enacted significant COVID-19 relief 

measures and approved 

specific short-term 

solutions for the most 

pressing threats and 

problems brought on 

by the pandemic. These 

legislative and policy 

actions rolled out during 2020 and 2021 as 

advocates, researchers, the media, and those 

directly affected reported the COVID-19 landscape 

and associated workforce challenges. Even 

as federal COVID-19 relief bills did not seek to 

reform the long-standing structural problems that 

direct care workers experienced, they afforded a 

glimpse into what was possible and practicable.

PPE and COVID-19 Testing

Lack of timely coronavirus testing and PPE, 

including gowns, masks, gloves, and face 

shields, placed many direct care workers 

in increased danger of becoming infected 

and spreading the virus to clients and family 

members. COVID-19 testing was limited in the 

early days of the pandemic, and people who 

were able to be tested had long waits for test 

results. Provisions of the Paycheck Protection 

Program and Healthcare Enhancement Act,393

signed into law on March 18, 2020, allocated 

funds to scale up coronavirus surveillance and 

testing capabilities. However, the direct care 

workforce, especially those serving people with 

disabilities and older people living at home or 

in other community-based settings and at high 

risk for infection, found testing challenging: 

limited availability of testing during the early 

months of the pandemic and other barriers 

such as lack of transportation, difficulty taking 

time off from work, concerns over the cost of 

testing, and fear of revealing their immigration 

status to authorities 

were common barriers 

to testing. A survey of 

states conducted by 

Health Management 

Associates and the 

Kaiser Family Foundation 

for fiscal years 2020–2021 confirmed these 

problems. The survey found that nearly threequarters of states indicated concerns about 

access to COVID-19 tests for direct care 

workers, and almost all states reported that 

access to PPE for direct care workers was a 

serious concern. Several states reported the 

length of COVID-19 test processing times 

as a particular challenge. A small number of 

states reported limited testing due to lack of 

transportation to testing sites, which remained 

problems for rural areas.394

Confusion over who was responsible for 

payment of testing also persisted for months 

during 2020. Two federal COVID-19 relief bills, 

16 percent of Latino and 13 percent 

of Black adults left their jobs to 

care for family members during 

the pandemic

118 National Council on Disability
the Families First Coronavirus Response Act 

(FFCRA)395 and the CARES Act,396 signed into law 

during the onset of the pandemic, in March 2020, 

required most private health plans, Medicare, 

and Medicaid to pay for the COVID-19 testing 

procedure, the test itself, and other related costs, 

with no cost sharing required.

Some resources were also made available 

to finance free testing for uninsured people. 

However, the CARES Act limited access to free 

testing for immigrants and temporary workers, 

although states could provide testing for these 

groups through Medicaid programs. The CARES 

Act provided $1 billion for free coronavirus testing 

and treatment at federally supported community 

health centers where many immigrants sought 

care, regardless of citizenship status or insurance 

coverage. Immigrants who would have been 

eligible in some states to enroll in Medicaid 

during the pandemic and thus eligible for free 

testing were reluctant to do so, due to the 

Trump Administration’s “public charge” rule that 

would make immigrants who applied for public 

assistance ineligible to pursue legal residency 

status or citizenship.397 The rule discouraged 

immigrants from applying for Medicaid and the 

CHIP by interpreting “public charge” to include 

immigrants who either had previously received 

or who might rely on some types of public 

assistance in the future.

On March 14, 2020, the U.S. Citizenship and 

Immigration Services (USCIS) announced that it 

would not count the use of free COVID-19 testing 

services when determining if immigrants would 

potentially rely on public benefits in the future. 

However, likely many immigrants, including 

those who were direct care workers, chose not 

to take advantage of available testing, either 

because they were unaware of the March 14 

clarification or because they were uncertain 

that USCIS would implement it.398 Responding 

to advocates’ concerns about the devastating 

impact of the public charge rule on immigrant 

communities during the pandemic, the Biden 

Administration, on Tuesday, March 10, 2021, 

halted implementation of the policy following the 

reinstatement of a federal court order blocking 

it. The Department of Homeland Security would 

no longer consider receipt of Medicaid (except 

for Medicaid-supported institutionalization), 

public housing, or SNAP benefits as disqualifying 

factors in a public charge determination. The 

Department of Homeland Security also stated 

that it would not consider vaccination for the 

coronavirus or COVID-19 treatment in public 

charge determinations.399

Even though FFCRA and the CARES Act 

explicitly required that COVID-19 testing be 

free in most cases, the laws also required 

that testing be medically necessary. Guidance 

from CMS said that free testing was required 

“when medically appropriate for the individual, 

as determined by the individual’s attending 

healthcare provider in accordance with accepted 

standards of current medical practice.”400 Relying 

on this guidance, some health insurance plans 

applied cost sharing or denied COVID-19 testing 

claims for members who were asymptomatic 

when they were tested unless they knew or 

suspected they had been exposed to someone 

who was positive for the coronavirus.401 Where 

testing was offered, this interpretation placed the 

payment burden on the individual, undoubtedly 

making it difficult for even those direct care 

workers who had insurance to navigate the cost 

obstacles.402 Federal guidance issued by the 

Biden Administration early in 2021 clarified that 

health insurers must cover testing without any 

The Impact of COVID-19 on People with Disabilities 119
cost to the individual being tested except when 

testing was a requirement in employee return-towork programs.403

Reports in 2021 indicated that testing 

demand had dropped off even as testing 

availability was widespread in most areas. This 

suggested that testing barriers related to cost 

and availability had eased, making it somewhat 

easier for direct care workers to be tested 

later in the pandemic.404 Even so, the structural 

barriers related to testing and treatment for 

COVID-19 that some direct care workers 

encountered reveal the complex effects of 

historical racism.405

PPE, including gowns, masks, and gloves, 

was scarce for many months during 2020. 

direct care workers 

interviewed for a study 

in New York reported 

receiving conflicting 

information on COVID-19 

safety protocols and 

varied amounts of 

PPE from their home 

care agencies. They also reported relying on 

nonagency sources for news, PPE, and other 

supplies.406 DC workers, along with other health

workers, reported being forced to use trash 

bags as gowns, reuse face masks for weeks, 

and sometimes go totally without gloves.407 The 

CARES Act appropriated considerable federal 

funding to hospitals and other healthcare entities, 

which they could use for PPE. Still, the law did 

not allocate such funding to nursing homes 

and other LTCFs.408 The Health Management 

Associates–Kaiser Family Foundation study 

confirmed that in a few states, making PPE 

available for workers in institutional settings 

was a high priority, thus leaving communitybased workers with fewer options for obtaining 

these supplies.409 The CARES Act also expressly 

provided funds for PPE to protect home health 

workers providing care for veterans from 

contracting or spreading the coronavirus.410

A year and several months into the pandemic, 

most hospitals had access to PPE in bulk. Specific 

items, such as surgical masks, could be relatively 

easily purchased in stores. However, a few 

reports suggested that PPE supplies were still not 

readily and consistently available to small entities 

such as healthcare clinics, homeless shelters, 

home health agencies, and individual direct care 

workers. Even some nursing homes were still 

experiencing occasional shortages: One in 10 

nursing homes reported not having a week’s PPE 

supply on hand during the 

four weeks ending March 

7, 2021.411 This disparity 

in access to PPE was 

still evident as COVID-19 

infections increased in 

some states during the 

spring of 2021.412

COVID-19 Vaccination

As word that COVID-19 vaccinations would 

likely be available in early 2021, people with 

disabilities, older people, home care workers 

(direct care workers providing care for people in 

their homes and community settings), and family 

caregivers worried that they might not be included 

in federal and state vaccine allocation policies. 

Disproportionate rates of COVID-19 infection and 

death among nursing home residents and staff 

were well known, and CDC and state and local 

public health leaders responded by identifying 

nursing home workers and residents as top 

priority populations for vaccination. However, 

DC workers, along with other health 

workers, reported being forced to 

use trash bags as gowns, reuse face 

masks for weeks, and sometimes go 

totally without gloves

120 National Council on Disability
home care workers who worked for multiple 

clients faced a risk of COVID-19 infection similar 

to nursing home staff, yet federal and state 

officials did not include these direct care workers 

in recommended early vaccination eligibility. 

Public health officials based these decisions on 

the need to set priority populations because 

vaccine availability was limited, and public 

health data showing populations at greatest risk 

of COVID-19 infection should receive the first 

available shots. Little data was available about 

COVID-19 infection, illness, and death among 

home care workers, family caregivers, people with 

disabilities, and older people living in community 

settings. Therefore, these vulnerable groups were 

unnoticed and ignored by public health officials in 

many states’ early vaccine allocation protocols, as 

further detailed in chapter 1.

Also emerging as a concern was how 

structural racism, especially in healthcare, 

would affect how Black, Indigenous, and 

other communities of color, including direct 

care workers who were members of these 

communities, would gain access to the 

vaccine and be interested in being vaccinated. 

Researchers have noted that the long-standing 

effects of historical racism underpin inequalities 

in the processes for vaccine distribution. 

Disparities in access to computers and other 

digital technologies, for example, made it difficult 

or impossible for some people to access the 

array of vaccine scheduling websites. While 

internet websites were intended to make access 

to vaccine appointments equitable, relying 

on them had the effect of widening access 

disparities for some marginalized communities. 

The long history of racism in science and 

healthcare also caused some people from 

communities of color to express a wait-and-see 

attitude about the safety and efficacy of the 

COVID-19 vaccines.413

In December 2020, the same month that 

the U.S. Food and Drug Administration (FDA) 

approved two COVID-19 vaccinations for 

emergency use, the CDC’s Advisory Committee 

on Immunization Practices (ACIP) recommended 

priorities for demographic populations who 

would receive the vaccine first in light of limited 

supply. The CDC placed healthcare personnel 

and residents of long-term care facilities (LTCF) 

in Phase 1(a), the highest priority tier to receive 

the vaccine based on their risk of exposure 

to the virus and the high rate of COVID-19 

deaths in nursing homes.414 The CDC included 

home healthcare workers and people who 

deliver services for older people and people 

with disabilities, among many healthcare 

job classifications, in Phase 1(a) based on a 

comprehensive list of essential workers initially 

created by the US Department of Homeland 

Security.415 However, ACIP’s December 3 

advisory defines essential healthcare workers 

for purposes of inclusion in Phase 1(a) at that 

time as, “. . . all paid and unpaid persons serving 

in healthcare settings who have the potential 

for direct or indirect exposure to patients or 

infectious materials.” ACIP also explicitly noted 

that residents of LTCFs required personal care, 

thus DC workers who provided such services 

in these facilities were considered eligible 

healthcare personnel and included in Phase 1(a). 

Although the CDC was aware of the diverse 

workforce employed in the healthcare field, 

ACIP’s early vaccination guidance was expressly 

aimed at healthcare personnel who worked in 

settings where healthcare was delivered.416 The 

strong emphasis on vaccinating these workers 

first led many states to craft vaccine allocation 

The Impact of COVID-19 on People with Disabilities 121
policies that excluded DC workers who delivered 

personal care services in the homes of people 

with disabilities or in other community settings 

rather than healthcare settings. Moreover, 

people with disabilities under age 65 living in the 

community who required DC worker assistance 

to live independently were not specifically ranked 

within any of the four primary phases even 

though many were at high risk of coronavirus 

infection, serious COVID-19 illness, and even 

death. Disability advocates recommended that 

younger people with disabilities in the community 

be included in a high priority category, but most 

states did not mention disability in their initial 

vaccine allocation plans.417

The Advisory Committee on 

Immunization Practices’ Updated 

Interim Recommendation for 

Allocation of COVID-19 Vaccine—

United States December 2020418

Phase Groups Recommended to 

Receive COVID-19 Vaccine

1a Healthcare personnel

Long-term care facility residents

1b Frontline essential workers

Persons aged ≥75 years

1c Persons aged 65–74 years

Persons aged 16–64 years with 

high-risk medical conditions

Essential workers not 

recommended for vaccination in 

Phase 1b

2 All persons aged ≥16 years not 

previously recommended for 

vaccination

Some states and locales modified the federal 

vaccine guidance to include direct care workers 

who provide home care in a higher Phase 1 tier. 

For example, California initially placed home care 

workers in Phase 1b, Tier 2. Vaccination of these 

workers began in some counties in February 

2021. However, this did little to protect people 

with disabilities in HCBS since it was unclear 

at the time whether vaccination precluded the 

capacity to infect others.419

Massachusetts planned to start vaccinating 

all home care workers in February 2021. The 

state defined home care worker as “a clinical 

or non-clinical healthcare or home care worker 

doing in-person consumer or patient-facing care 

when the work is performed in the home of the 

patient/healthcare consumer.” Personal care 

attendants, home health, hospice, home care 

agency staff performing visits in the home, and 

an array of others who might have contact with 

an individual in their home were included.422

Even as some states included home care 

workers in their earliest vaccine phases, others 

did not, such as Louisiana. Moreover, officials in 

some locales were confused about direct care 

worker eligibility for the vaccine. For instance, 

some Florida vaccination sites initially turned 

away home care workers, thinking they were 

not yet eligible for the shots.423 Widespread 

media reports revealed that multiple vaccination 

websites were overwhelmed and hard to 

navigate, and the few available appointment 

slots were often filled. Rural direct care workers 

reported minimal availability, and they often 

had to travel long distances to get to a vaccine 

distribution site. Workers with limited English 

proficiency did not necessarily have access 

to technology or linguistically appropriate 

information about making a vaccine appointment 

122 National Council on Disability
Guidelines to California’s Health Departments Allocation of COVID-19 

Vaccine During Phase 1420

PHASE 1a ■ Persons at risk of exposure to SARS-CoV-2 through their work in any 

role in direct healthcare or long-term care settings

● This population includes persons at direct risk of exposure in 

their nonclinical roles, such as, but not limited to, environmental 

services, patient transport, or interpretation

■ Residents of skilled nursing facilities, assisted living facilities, and 

similar long-term care settings for older or medically vulnerable 

individuals

1b

Tier 1

■ Acute care, psychiatric, and correctional facility hospitals

■ Skilled nursing facilities, assisted living facilities, and similar settings 

for older or medically vulnerable individuals

● Also, in concordance with ACIP, residents in these settings

■ Paramedics, EMTs, and others providing emergency medical services

■ Dialysis centers

Tier 2 ■ Intermediate care facilities for persons who need noncontinuous 

nursing supervision and supportive care

■ Home healthcare and in-home supportive services

■ Community health workers, including promotoras421

■ Public health field staff

■ Primary Care clinics, including Federally Qualified Health Centers, Rural 

Health Centers, correctional facility clinics, and urgent care clinics

Tier 3 ■ Specialty clinics

■ Laboratory workers

■ Dental and other oral health clinics

or navigating the multiple complex vaccine 

websites. Often, alternative methods to make 

an appointment, such as a telephone line, were 

overwhelmed with long wait times, could not 

record messages, or were not working. Other 

direct care workers were concerned about 

the cost of the vaccine and the possible need 

to reveal their immigration status in order 

to receive shots, problems similar to those 

they faced being tested for the coronavirus. 

Even if they could make an appointment and 

surmount other hurdles, some workers simply 

could not take time off from work to travel to a 

vaccination site.424

As vaccine eligibility eased and availability of 

vaccines increased, CDC stated that everyone 

16 years of age and older was eligible to get 

a COVID-19 vaccine as of April 19, 2021. On 

The Impact of COVID-19 on People with Disabilities 123
May 10, 2021, the FDA approved emergency 

use authorization for the Pfizer-BioNTech 

COVID-19 vaccine for adolescents age 12 

through 15 years.425 Even with increased vaccine

availability, communities of color hit hardest 

by the pandemic were not always receiving 

an equitable share. 

Federal vaccination 

data indicated that 

communities with 

the highest level of 

disadvantage and health 

vulnerabilities, based 

on the Social Vulnerability Index,426 were being 

vaccinated at a lower rate than communities 

with fewer disadvantages and vulnerabilities.427

Moreover, decades of research confirmed 

that race and ethnicity status are factors that 

predict unequal access to healthcare and 

health disparities outcomes. The cumulative 

effect of these multiple, generational inequities 

disproportionally affected Black, Indigenous, 

and other communities of color, including 

direct care workers who are members of these 

communities. Such 

systemic inequities 

inevitably contributed 

to poor healthcare 

experiences and distrust 

of medical professionals, 

establishing the basis 

for concern about the 

COVID-19 vaccine’s 

safety and effectiveness.428 These influences 

were reflected in vaccination figures: By early 

March 2021, only about a quarter of home care 

workers had been vaccinated, compared with 

approximately two-thirds of hospital workers and 

half of nursing home workers.429

Enhanced Employment Wages 

and Benefits

Federal COVID-19 relief legislation contained 

provisions that very likely benefitted many 

direct care workers, their families, and family 

caregivers, while other provisions specifically 

worked against direct 

care workers. The 

FFCRA,430 the first of 

the COVID-19 relief 

packages, signed into 

law on March 18, 2020, 

included assistance to 

states for payment of unemployment insurance 

claims. Emergency paid sick leave was also 

included, but nursing homes and home health 

agencies were among various health providers 

and educational organizations that could exempt 

their direct care workers from eligibility if 

they chose to do so. Tax credits for paid sick 

and paid family and medical leave were also 

made available for employers of a specific size, 

including home care agencies and nursing 

facilities. Congress intended these credits to 

encourage employers 

to pay sick, family, and 

medical leave.431 While 

FFCRA provided sick 

leave and paid family and 

medical leave, gaps in 

the legislation excluded 

some direct care workers 

from eligibility for the 

enhanced benefit. For instance, FFCRA excluded 

independent contractors from eligibility for 

emergency family medical leave. Therefore, 

home care workers employed as independent 

contractors were ineligible for this temporary 

benefit. FFCRA also exempted businesses 

Even with increased vaccine 

availability, communities of color hit 

hardest by the pandemic were not 

always receiving an equitable share

By early March 2021, only about a 

quarter of home care workers had 

been vaccinated, compared with 

approximately two-thirds of hospital 

workers and half of nursing home 

workers

124 National Council on Disability
with fewer than 50 employees from providing 

emergency family medical leave, thus limiting 

eligibility for home care workers employed by 

some smaller home healthcare agencies.432

Some states responded to these gaps. For 

instance, California sought federal approval under 

FFCRA to increase sick leave for Medicaid home 

care workers. This request enabled workers 

in California’s In-Home Supportive Services 

(IHSS) program who were employed by people 

with disabilities and who met specific eligibility 

requirements to receive the new federal 

COVID-19 sick leave. IHSS provides in-home 

assistance to eligible people with disabilities 

to enable them to live in the community.433

Because FFCRA expired at the end of 2020, 

California passed a measure in March 2021 that 

provided for supplemental paid sick leave for 

specified IHSS and other personal care service 

providers who were unable to work or telework 

due to certain reasons related to COVID-19. The 

measure made sick leave available retroactively 

to January 1, 2021.434

Many direct care workers and family 

caregivers who lost or left their jobs during 

the pandemic depended on income support 

provided by unemployment insurance. The 

CARES Act included a 6.2 percent increase in 

federal Medicaid matching funds available to 

states to ensure continued insurance coverage 

for beneficiaries. It also focused on expanding 

unemployment insurance by providing an 

additional, federally financed $600 benefit, 

referred to as Federal Pandemic Unemployment 

Compensation, that supplemented weekly 

unemployment insurance benefits, expanded 

benefit eligibility, and provided weeks of 

additional federally financed benefits.435 Later 

in the year, on December 27, 2020, Congress 

passed the Consolidated Appropriations Act 

extending Federal Pandemic Unemployment 

Compensation through March 2021.436 The Act 

added a $300 additional benefit to all recipients, 

extended benefits for people who had been 

unemployed long-term and for low-wage and 

self-employed workers who were not eligible 

for regular unemployment.437 Another new 

law, the Coronavirus Response and Relief 

Supplemental Appropriations Act438 re-instituted 

some enhanced unemployment insurance 

benefits, covering January 1, 2021, through 

March 14, 2021. However, the law did not extend 

COVID-19–related paid sick leave or increase 

funding for Medicaid, long-term services and 

supports, and home and community-based 

services.439

The CARES Act also provided a recovery 

rebate for the 2020 tax year of $1,200 for an 

individual return ($2,400 for a joint return) with 

an additional $500 per qualified dependent child. 

Income limited eligibility for these rebates, but 

they nonetheless likely benefitted direct care 

workers and some family caregivers.

During the spring of 2020, Congressional 

interest was building to provide federal funding 

for hazard pay for the nation’s essential workers, 

including the direct care workforce. However, 

that interest never culminated in legislation, 

so individual employers had to decide whether 

they would provide this form of compensation 

for their workers. Research suggested that 

most chose not to do so. However, some 

states took advantage of CARES Act funding to 

allocate temporary hazard pay for some public 

and private sector essential workers, including 

direct care workers in some cases. For instance, 

Pennsylvania established a grant program that 

afforded about 40,000 workers who earned 

The Impact of COVID-19 on People with Disabilities 125
less than $20 per hour a $3 per hour raise for 

10 weeks. The program only helped a fraction 

of those who qualified. So, with equity in mind, 

the state emphasized assisting those with the 

greatest financial need. Direct care workers, 

including home health aides, personal care aides, 

and nursing home workers, benefitted most from 

the program. With $120 million from the CARES 

Act, Michigan temporarily paid Medicaid-funded 

direct care workers an additional $2 per hour.440

Virginia made $1,500 one-time payments to 

over 43,500 home healthcare workers who 

provided support for Medicaid beneficiaries.441

Comprehensive data is lacking on how many 

direct care workers 

received COVID-19 wage 

compensation; however, 

one study reported that 

70 percent of direct 

support professionals 

who work with people 

with intellectual and 

developmental disabilities 

did not receive COVID-19 

wage augmentation or 

bonus pay, suggesting 

that many other direct care workers were likely 

left out of these benefits.442

In September 2020, CMS announced the 

availability of up to $165 million in supplemental 

funding for 33 states that had been operating 

Money Follows the Person demonstration 

programs. Money Follows the Person, officially 

slated to end in 2018, had been extended several 

times temporarily. Its funding helped people 

with disabilities move from nursing homes to 

their own homes or other community settings. 

Among many options, states could use the 

new funding for direct care worker recruitment, 

education, training, technical assistance, and 

quality improvement activities. States could also 

elect to include training people with disabilities 

to become direct service workers. Eligible states 

could submit supplemental budget requests 

under this funding opportunity on a rolling basis 

through June 30, 2021.443

Congress enacted the American Rescue Plan 

Act of 2021 (ARPA),444 a $1.9 trillion response to 

the pandemic, on March 11, 2021. ARPA included 

$350 billion for state and local governments and 

$12.7 billion to allow more low-income people 

with disabilities and older people to receive care 

at home instead of nursing homes. It included a 

one-year, 10 percentage 

point boost in the federal 

contribution for Medicaid 

HCBS to states.

According to 

CMS, funds could be 

used for a variety of 

purposes, provided they 

supplemented and did not 

supplant existing state 

funds used for HCBS. Of 

importance to the direct 

care workforce, funds could support caregiver 

training and education and create financial 

incentives to expand the number, retention rates, 

and skills of the direct care workforce. States 

could provide hazard pay, overtime pay, and shift 

differential pay for home health workers and 

direct support professionals, including those 

who worked with people with intellectual and 

developmental disabilities. Funds could also be 

used to increase rates for home health and other 

HCBS agencies or individuals who employed 

direct support professionals, with the expectation 

that they would increase pay rates for workers.445

70 percent of direct support 

professionals who work with people 

with intellectual and developmental 

disabilities did not receive COVID-19 

wage augmentation or bonus pay, 

suggesting that many other direct 

care workers were likely left out of 

these benefits

126 National Council on Disability
California unveiled a preliminary ARPA HCBS 

spending plan in early May 2021.446 Following 

a short public comment period and additional 

discussion with lawmakers, HHS submitted a 

final, revised plan to CMS on July 12, 2021. The 

plan included expanding existing IHSS worker 

training to support people with complex care 

needs and supporting and incentivizing career 

pathways.447

ARPA also provided several other types of 

assistance for direct care workers, e.g., tax 

cuts and immediate cash relief for low- and 

middle-income families, renter assistance, 

help for homeowners to avoid foreclosure, 

extended unemployment 

benefits, and an 

additional $300 per 

week federal increase in 

unemployment benefits. 

This provision prevented 

direct care workers and 

family caregivers who 

left their jobs to care for 

family members or who 

were laid off, or who 

contracted COVID-19, 

from losing their unemployment insurance 

benefits.448 ARPA also allocated $145 million for 

the National Family Caregiver Support Program, 

which provided grants to states and territories 

to fund various supports that helped family and 

informal caregivers care for older adults in their 

homes for as long as possible.449

Medicaid and Medicare

As the pandemic spread, states soon 

recognized its effect on people with disabilities 

and older people who required Medicaid-funded 

HCBS, direct care workers, family caregivers, 

and others who provided these services. As 

infection engulfed congregate care settings, 

affecting residents and workers alike, some 

direct care workers and family caregivers fell 

ill or stayed home to care for family members 

or avoid becoming ill themselves. Others 

continued working in homes, community 

settings, and nursing homes for the usual low 

wages and without hazard pay, even at the 

risk of becoming ill, especially when PPE was 

scarce. Recognizing the emergency, some 

states and the federal government used various 

Medicaid emergency waiver authorizations to 

respond to participant and workforce challenges, 

including severe staff 

shortages, historically 

low direct care worker 

wages, and inadequate 

benefits, that had been 

brought to the forefront 

by the pandemic.

For instance, CMS 

approved various state 

requests for Medicaid 

“Appendix K” and 

Section 1135 emergency 

waivers, including raising direct care workforce 

wages and increasing benefits. CMS approved 

34 states to pay spouses and parents of minor 

children as Medicaid providers through various 

waivers, and 33 states gained permission to 

add family members as eligible providers for 

adults with disabilities.450 CMS approved these 

waivers as mitigation strategies to limit exposure 

to COVID-19 in the family home and to provide 

support for individuals who returned from 

congregate settings to family homes to avoid 

the risk of transmission. They also responded 

to the existing direct care workforce and family 

CMS approved 34 states to pay 

spouses and parents of minor 

children as Medicaid providers 

through various waivers, and 

33 states gained permission 

to add family members as 

eligible providers for adults with 

disabilities

The Impact of COVID-19 on People with Disabilities 127
caregiver challenges that had been intensified by 

COVID-19.451

Thirty-three states also received CMS approval 

to modify Medicaid HCBS provider payment 

rates. For instance, Michigan and Wisconsin 

received Medicaid Section 1115 waivers allowing 

them to pay higher pay rates for direct care 

workers providing HCBS to maintain worker 

capacity. Delaware, Hawaii, Massachusetts, 

North Carolina, Rhode Island, and Washington 

were granted Section 1115 waivers to enable 

retainer payments to certain habilitation and 

direct care workers to maintain capacity during 

the COVID-19 emergency. In California, an 

approved 1915(c) waiver extended emergency 

paid sick leave for direct care workers unable to 

work during COVID-19. California allocated money 

to hire social workers 

and pay overtime when 

clients and Medicaidfunded direct care 

workers needed their 

services.452

Recent changes to the Medicare program, 

including some that responded to the pandemic, 

also affected older people with disabilities and 

their family caregivers. The CARES Act permitted 

nonphysicians such as nurses and physician 

assistants to approve Medicare home healthcare 

services, streamlining the approval process and 

reducing the burden on family caregivers who 

often had to coordinate skilled long-term care 

services through a physician.

The 2018 Chronic Care Act, contained in the 

Bipartisan Budget Act of 2018, another federal 

law that benefited family caregivers and people 

with disabilities during the pandemic, expanded 

Medicare supplemental benefits and allowed 

health plans to provide services that were 

not primarily health-related.453 For instance, 

supplemental services could include medical 

transportation for nonemergencies, caregiver 

support including respite and in-home services, 

and bathroom safety devices. By 2021, 95 plans 

offered support for caregivers of enrollees.454

While the availability of these benefits varied 

widely regionally and by health insurance 

plan, some family caregivers and Medicare 

beneficiaries nevertheless likely benefited during 

the pandemic.455

ARPA and other pandemic relief laws partially 

responded to the economic and other hardships 

the direct care workforce experienced before and 

during the pandemic. States’ actions to achieve 

flexibility within the complex Medicaid program, 

the main source of funding for HCBS, also 

foretold a possible future 

when direct care workers 

could gain recognition, 

wages, and benefits 

commensurate with their 

critical roles. Changes in 

Medicare before and during the pandemic also 

provided some modest help to family caregivers 

and increased access to a few new services 

for beneficiaries in specific geographic health 

insurance markets.

These stopgap measures provided some 

short-term help for a struggling direct care 

workforce and family caregivers. However, 

because they were a temporary response to 

a public health crisis, they did not establish a 

permanent pathway to reversing the inequities 

that direct care workers and family caregivers 

experienced every day. Even so, these measures 

spurred an overdue conversation about the 

critical, yet undervalued and underrecognized role 

direct care workers and family caregivers played 

Thirty-three states also received 

CMS approval to modify Medicaid 

HCBS provider payment rates

128 National Council on Disability
in the lives of people with disabilities and older 

people. This heightened awareness, driven by a 

worldwide public health emergency, presented 

advocates and policymakers with a unique 

opportunity to create permanent reforms built on 

state and federal emergency Covid-19 policies.

Federal Policy Proposals

Two federal policy proposals, the Better Care 

Better Jobs Act, as initially outlined in the 

American Jobs Plan,456 and the HCBS Access 

Act457 aimed to increase funding and reduce 

waiting lists for Medicaid HCBS services and 

invest in the nation’s caregiving infrastructure. 

These proposals represented decades of 

advocacy by people with disabilities and older 

people, allies, organizations of home care 

workers, unions, 

researchers, and policy 

leaders.458 They were 

brought to the forefront 

because the coronavirus 

pandemic revealed

deficiencies in HCBS and 

deep inequities in the 

treatment and status of direct care workers and 

family caregivers. If these proposals are enacted, 

people with disabilities and older adults would 

have greater access to Medicaid HCBS and direct 

care workers could experience improvement 

in wages, benefits, and collective bargaining 

opportunities. Family caregivers could also gain 

access to additional assistance and supports.

Building on the $12.7 billion short-term 

funding included in the American Rescue Plan, 

the Biden Administration sought an additional 

$400 billion investment in the nation’s caregiving 

infrastructure. The Better Care Better Jobs 

Act,459 introduced in the Senate on June 24, 

2021, if enacted, would strengthen and expand 

access to Medicaid HCBS, promote adequate 

wages and benefits for direct care workers, 

and ensure opportunities to organize or join a 

union. The Better Care Better Jobs Act would 

support quality and accountability and would 

facilitate state planning. It would also help 

states build innovative workforce programs and 

connect workers with people with disabilities 

and older people. The proposed legislation 

would permanently authorize protections against 

impoverishment for people whose spouses 

receive Medicaid HCBS and make permanent the 

Money Follows the Person program.460

The HCBS Access Act,461 a federal legislative 

discussion draft introduced in March 2021, 

would amend Title XIX of the Social Security 

Act to make coverage 

of HCBS mandatory 

rather than optional 

under the Medicaid 

program. This proposal 

advances a long-standing 

recommendation from 

disability advocates to 

reverse the institutional bias in the Medicaid 

program in favor of HCBS.

Another Biden Administration proposal, the 

American Families Plan, directly addressed issues 

that affect direct care workers throughout the 

country and emphasized reforms that responded 

to the effects of the pandemic. If enacted, the 

American Families Plan would extend key tax 

cuts and child tax credits in the American Rescue 

Plan, create a national paid family and medical 

leave program, and reform unemployment. It 

would also improve healthcare affordability, 

ensure that childcare is affordable, and provide 

two years of free community college.

[T]he coronavirus pandemic 

revealed deficiencies in HCBS and 

deep inequities in the treatment and 

status of direct care workers and 

family caregivers

The Impact of COVID-19 on People with Disabilities 129
The U.S. Citizenship Act of 2021,462 another 

Biden Administration proposal, would provide 

an earned pathway to citizenship for the 

U.S. undocumented population. The bill was 

introduced on February 18, 2021. While it is 

beyond the scope of this chapter to report fully 

on immigration proposals, the U.S. Citizenship 

Act, if enacted, would directly bear on some 

immigrant members of the direct care workforce 

and provide remedies to some of the starkest 

problems they faced before and during the 

pandemic. Immigrants make up a substantial part 

of the direct care workforce and fill a crucial role 

in meeting the growing national need for direct 

care workers. Barriers 

to legal residency and 

citizenship have forced 

some of these workers 

into the shadows, even 

as they provide critical 

services that enable 

people with disabilities 

and older people to 

remain in their homes 

and community-based 

settings. Expediting 

immediate routes to lawful immigrant status 

would help expand the direct care workforce 

to meet the growing need, provide important 

long-term economic benefits, and create career 

advancement opportunities for these workers.463

Social Insurance

The National Academy of Social Insurance (NASI) 

has proposed Universal Family Care (UFC), a 

social insurance program model that states could 

consider for early childcare and education (ECCE), 

paid family and medical leave (PFML), and longterm services and supports (LTSS). NASI argues 

that large-scale social forces inspire the need 

for social insurance that would respond to race, 

ethnicity, gender, and disability inequalities that 

social institutions have created over decades. 

The UFC model envisions that all workers would 

contribute to a single care insurance fund that 

would pay out ECCE, PFML, and LTSS benefits 

when these needs arise. The fund would provide 

these benefits through a single, integrated 

access point for families. Program designs 

would be based on state priorities, such as 

funding sources, eligibility requirements, who 

is covered, and adequacy of benefits. Federal 

programs, including Social Security and state 

programs including for 

LTSS and PFML, have 

successfully used this 

social insurance model 

and serve as examples 

of how programs 

can be successfully 

structured.464

The impact of the 

coronavirus pandemic 

on direct care workers 

illustrates the appeal 

of social insurance by revealing structural 

inequalities that have affected direct care 

workers disproportionately and pointing out the 

inadequacies of the current social safety net in 

times of crisis. The pandemic has brought to 

the forefront the urgency of increasing wages 

for the direct care workforce as a means of 

acknowledging the critical work they do, retaining 

them in the workforce, attracting people to the 

field, and meeting their basic economic needs. At 

the same time, policy advocates have expressed 

concern that providing direct care workers with 

a living wage over the long term will be difficult 

The pandemic has brought to the 

forefront the urgency of increasing 

wages for the direct care workforce 

as a means of acknowledging the 

critical work they do, retaining them 

in the workforce, attracting people 

to the field, and meeting their basic 

economic needs

130 National Council on Disability
if the primary funding source is Medicaid, which 

must compete with other public programs for 

general tax revenue.

Over many years, federal policymakers 

proposed public insurance plans in response 

to the need to find ways to pay for the nation’s 

growing demand for LTSS/HCBS. The Community 

Living Assistance Services and Supports (CLASS) 

program was passed as part of the Affordable Care 

Act,465 but later was repealed, in 2013, because it 

was considered financially unstable.466 Since then, 

at least four states—California, Maine, Michigan, 

and Minnesota—have explored models for making 

LTSS available beyond Medicaid.467 Washington 

has passed legislation establishing a Long-Term 

Care Trust that would provide a daily benefit of 

$100 beginning in 2025, after a 10-year vesting 

period. The lifetime benefit was capped at $36,500 

and would be available to individuals who require 

help with three or more ADLs. Revenue came 

from a small tax (.58 percent) on each person’s 

earnings.468 Hawaii enacted the Kupuna Care 

Program in 2008, making limited LTSS available to 

non-Medicaid-eligible residents 60 or older so they 

can continue living at home or in the community.469

These state policies mark a trend that 

recognizes the current system of support for 

people with disabilities and older people is 

unsustainable, leaving gaps in service for people 

who do not meet income eligibility requirements 

for Medicaid. Moreover, it does not provide 

adequate pathways to achieve pay equity, provide 

a living wage, or expand career opportunities for 

direct care workers. The social insurance model 

offers an alternative to Medicaid-funded LTSS/

HCBS that could bolster and stabilize wages for 

the direct care workforce, spur improvements 

in training and job performance, and foster 

economic stability.

Summary of Findings

■ Improvements in wages and employment 

benefits, including healthcare insurance, 

have long been identified as fundamental 

reforms required to reduce direct care 

worker shortages, boost job opportunity and 

satisfaction, and increase financial security 

for this diverse and underrecognized 

workforce. In addition to low wages and 

limited benefits, few career development 

and advancement opportunities spurred 

high job turnover in a workforce made up 

disproportionately of women and people of 

color. Moreover, some direct care workers 

faced additional insecurities based on 

their immigration status. The coronavirus 

pandemic laid bare these deficiencies.

■ DC workers who are members of racial, 

ethnic, and immigrant groups faced 

disproportionate health and economic 

risks during the pandemic. Long-standing 

health and healthcare inequities left 

them more likely to experience severe 

COVID-19 illness if they become infected. 

Yet, they often were overlooked and were 

not provided with adequate coronavirus 

testing or PPE and supplies. Such systemic 

inequities contributed to distrust of medical 

professionals and established the basis 

for concern about the COVID-19 vaccine’s 

safety and effectiveness. Moreover, the 

direct care workforce lacked employee 

benefits such as paid medical and family 

leave that could help them avoid a financial 

crisis if they contracted the virus, lost their 

jobs, chose to isolate to protect themselves 

or their families, or left their jobs to care for 

their own family members.

The Impact of COVID-19 on People with Disabilities 131
■ Lack of accurate data on the prevalence of 

COVID-19 illness and death among home 

care workers and the people they cared 

for made it impossible to understand with 

any accuracy the true scope of the national 

COVID-19 disaster. Occupational data on 

the direct care workforce was incomplete 

and did not consider the varied roles and 

titles of direct care workers, which led 

to undercounting certain workers and 

excluding others entirely, thus obscuring a 

full understanding of COVID-19’s impact. 

Without accurate data, policy advocates 

had to base recommendations mostly on 

anecdotes and early qualitative research.

■ In addition to the paid direct care workforce, 

millions of caregivers provided unpaid help 

for adults or children with disabilities in the 

United States. Even before the pandemic, 

family caregivers experienced emotional 

stress, short- and long-term financial 

consequences to devoting significant time 

to caregiving, and a decline in self-reported 

health status. During the pandemic, millions 

of family caregivers were forced to shelter 

in place, and some had to take a leave 

from their jobs to care for family members. 

Many had little or no paid leave while they 

struggled to fill gaps in caregiving services 

for their family members.

■ As the pandemic in the United States 

moved into its second year, direct care 

workers still reported shortages of PPE. 

Federal legislation increased production 

and distribution of PPE during the first year 

of the pandemic; however, regional and 

local distribution channels were uneven, 

and smaller home care agencies and other 

HCBS service providers reported unequal 

access to these essential supplies. If 

policymakers do not address the reasons 

for these lingering deficiencies now, they 

will carry forward to future public health 

emergencies.

■ Federal COVID-19 relief legislation, 

emergency Medicaid authorizations, 

changes to Medicare, and actions by some 

states provided limited, partial relief for 

some of the most severe economic and 

health challenges direct care workers and 

unpaid family caregivers experienced during 

the pandemic. These short-term actions did 

not resolve the long-standing deficiencies 

reported in this chapter; however they 

served as a road map that could guide longterm, permanent transformations.

■ Building on the lessons of the COVID-19 

pandemic, the Biden Administration 

developed several legislative proposals 

intended to spur long-term reforms affecting 

direct care workers and family caregivers. 

One proposal would increase direct care 

worker pay and benefits, encourage 

opportunities to organize or join a union, 

build state HCBS infrastructures, and extend 

key tax cuts and child tax credits. Another 

would increase support to family caregivers 

and make Medicaid HCBS mandatory rather 

than optional, thus increasing the need 

for direct care workers. Still others would 

create a national paid family and medical 

leave program, reform unemployment, 

and provide an earned pathway to 

citizenship that would open opportunities 

for undocumented direct care workers. 

If enacted, these legislative proposals 

132 National Council on Disability
would support family caregivers and fully 

acknowledge the value and worth of direct 

care workers by reducing some of the most 

pervasive barriers to their recruitment, 

retention, and promotion.

■ Even as the Biden Administration proposals 

held promise for improving wages, benefits, 

and employment opportunities for direct 

care workers, policy advocates worried that 

providing direct care workers with a living 

wage and benefits over the long term would 

be difficult if the primary funding source was 

Medicaid. Social insurance program models 

that include HCBS, such as Universal Family 

Care, offered payment alternatives and 

responded to race, ethnicity, gender, and 

disability inequalities that social institutions 

had created over decades.

Recommendations

To ensure the United States will have the 

necessary DC workforce that will be needed 

to support people with disabilities safely in the 

community in the event of a future pandemic or 

similar national health crisis or emergency, NCD 

recommends the following actions.

Recommendations for Congress

Congress should:

■ Enact the Better Care Better Jobs Act, the American Families Plan, the U.S. Citizenship 

Act of 2021, and the HCBS Access Act. Enact federal legislation based on the principle of 

Universal Family Care, a social insurance program model for early childcare and education, 

paid family and medical leave, and long-term services and supports as envisioned by 

the National Academy of Social Insurance. Built on the models of Social Security and 

Medicare, Universal Family Care is an integrated approach to care policy that recognizes 

long-standing social inequities based on race, ethnicity, and disability. Ensure that future 

and proposed legislation, such as the Better Care Better Jobs Act, which builds on the 

ARPA’s expanded funding for Medicaid home and community-based services, includes 

funding to improve direct service workforce wages and benefits and increase recruitment 

and retention. This funding should include a mechanism to ensure that workers’ wages 

and benefits are adequate for the present and adjusted as necessary in the future to 

ensure a stable workforce that is paid a living wage. It should also require as a condition of 

receiving such funding that states either provide directly or require that home healthcare 

agencies, CCFs, and other service providers provide paid family and medical leave for their 

direct care workers. States should also be required to ensure that direct care workers 

have access to adequate, affordable healthcare insurance either as an employer or 

union-sponsored benefit, through the Health Insurance Marketplace, or by other means. 

(continued)

The Impact of COVID-19 on People with Disabilities 133
Recommendations for Congress: continued

Provide federal tax credits for employers offering a minimum number of weeks of paid 

leave to family caregivers as an incentive to make such leave available. Tax credits should 

also be offered to offset out-of-pocket expenses related to caregiving, such as housing 

costs, home modifications, respite, medical costs and other expenses incurred from 

providing care.

Recommendations for Federal Agencies

■ HHS and CMS should require State Medicaid waiver requests to include assurances that 

the direct care workforce will receive fair and living wages and benefits, including paid 

family and medical leave, if waiver funds are used for direct care workforce compensation.

■ HHS, DOL, and BLS should collaborate to update the occupational codes assigned to 

direct care workers to reflect more accurately the wide range of jobs they perform and to 

better include those workers who do not fit squarely into current classifications.

■ FEMA, HHS, and ACL should collaborate to develop specific distribution networks with 

state and local departments of public health and community-based organizations that are 

in direct contact with direct care workers and family caregivers (e.g., Aging and Disability 

Resource Centers, Independent Living Centers, grantees of the National Family Caregiver 

Support Program [NFCSP], veterans’ organizations) that can assist with distribution of PPE 

and other resources and supplies during natural or public health emergencies, with an 

emphasis on reaching individual home care workers who do not work for a home health 

agency, in nursing homes, or other residential facilities and therefore do not have ready 

access to resources or collective purchasing power.

Recommendations for States and State Medicaid Agencies

■ States and State Medicaid agencies should implement permanent policies that encourage 

and facilitate paid family caregiving and invest in support services for such caregivers.

134 National Council on Disability
Chapter 4: Education and COVID-19

Students with Disabilities Before 

and After the Pandemic

Under ordinary circumstances, students 

with disabilities—about 14 percent of 

students from kindergarten to 12th grade, 

and more than 7 million children—face multiple 

and substantial barriers to education. In 2018, 

NCD reported that the longstanding federal 

underfunding of the Individuals with Disabilities 

Education Act (IDEA) was adversely affecting 

the ability of students with 

disabilities to receive Free 

and Appropriate Public 

Education (FAPE), causing 

delays and denials of 

services, and triggering 

unfair social resentment and 

discrimination.470 NCD also found a nationwide 

shortage of qualified special education teachers 

and related service providers.471

In this funding context, districts often fail to 

comply fully with the IDEA, and instead make 

decisions that ration and deny services and 

supports to meet the unique needs of students 

with disabilities.472 Students with disabilities 

then suffer the consequences. Students with 

disabilities have lower test scores and are less 

likely to graduate high school.473 Just over 67 

percent of students with disabilities graduate 

high school, compared to about 85 percent of all 

students.474 Students with disabilities are more 

likely to be chronically absent.475 The “academic 

achievement gap” between students with 

and without disabilities has remained roughly 

unchanged over the last decade.476

Students with disabilities also have higher 

rates of discipline, including suspensions and 

referrals to law enforcement. Students with 

disabilities represent 12 percent of students 

enrolled, but are 26 percent of students 

receiving an out-ofschool suspension, 

and 25 percent of 

students referred to 

law enforcement.477

Students with 

disabilities are much more likely than students 

without disabilities to be restrained and secluded 

at school,478 a dangerous and ineffective practice 

that has caused serious injuries and deaths.479

Rates of discipline and handcuffings at school are 

even higher and more disproportionate for Black 

students with disabilities.480

Discipline often causes exclusion from 

the classroom and lost instruction481 and can 

advance the “school to prison pipeline.”482

Up to 85 percent of youth in juvenile detention 

facilities have disabilities that make them 

Just over 67 percent of students with 

disabilities graduate high school, 

compared to about 85 percent of all 

students

The Impact of COVID-19 on People with Disabilities 135
eligible for special education services, and a 

disproportionate number of percentages of these 

detained youth are youth of color.483

Many students with 

disabilities are multiply 

marginalized, which 

creates additional barriers 

to equal educational 

opportunity. Students 

with disabilities are 

more likely to be lowincome.484 They are 

disproportionately 

Black.485 They may be in the foster care system, 

or juvenile justice systems, or both. About 32 

percent of children in foster care are children with 

disabilities,486 and, as noted, up to 85 percent of 

children in juvenile detention have disabilities. 

Children with disabilities may be homeless;487

they may be English language learners.488 Many 

experience intersectional discrimination based 

on multiple statuses, such as disability, sex, race, 

ethnicity, sexual orientation, gender identity, 

and size. These additional statuses and traumas 

exacerbate the vulnerabilities of those who are 

already struggling with academics, behavior, 

planning, speech, motor skills, and other areas 

essential to long-term success.

The COVID-19 pandemic worsened the 

educational experience for many students with 

disabilities.489 The shift from an in-person model 

of learning to fully remote education as the sole 

option for education exacerbated the exclusion of 

students with disabilities.490 Barriers to education 

were worse for students with disabilities in lowincome households who did not have access 

to reliable high-speed internet and appropriate 

computers, or to adults with expertise in this 

technology.491

During the pandemic, families with students 

with disabilities experienced the failure of 

school districts to provide notices, meetings, 

assessments, plans, and 

services, and to comply 

with the procedural 

and substantive 

requirements of the 

IDEA and Section 504 

of the Rehabilitation 

Act. A GAO study that 

interviewed researchers, 

representatives from 

national organizations, and officials from four 

school districts, and reviewed the learning plans 

from 15 school districts, supported much of the 

anecdotal evidence of the pandemic’s impacts 

on education for students with disabilities. It 

found that some students with disabilities did not 

receive all of the services and supports contained 

in their IEPs or Section 504 plans during shelter 

in place,492 and many school districts shortened 

their school day for all students, making it difficult 

to find time to provide the specialized instruction 

and related services detailed in students’ IEPs.493

The onset of the pandemic and remote 

learning for K-12 students triggered the abrupt 

cessation, often for months, of essential services 

and supports that are typically provided to 

students with disabilities in person or on school 

campuses, such as occupational therapy, speech 

and language therapy, behavioral and mental 

health supports, small group instruction, and 

one-on-one aides.494 Students with disabilities 

no longer had access to Braille or tactile learning 

tools. Officials from the school districts studied 

by the GAO reported that it was particularly 

difficult to deliver these “related services” that 

would ordinarily include hands-on instruction or 

Many students with disabilities 

are multiply marginalized, which 

creates additional barriers to 

equal educational opportunity

Students with disabilities are more 

likely to be low-income. They are

disproportionately Black

136 National Council on Disability
equipment not available in families’ homes.495

While some school districts implemented small 

in-person cohorts for children with disabilities or 

provided an in-person (athome) aide for students 

who could not access 

a free and appropriate 

public education (FAPE) 

without in-person 

services, many school 

districts refused to do 

so.496 Even students with 

disabilities who were 

provided with an inperson setting on school 

campuses were often still 

receiving their instruction 

through a computer 

screen. In-person staff 

wore masks and maintained distance, making 

any communication difficult for many students 

with disabilities, particularly those with hearing 

loss. Many K-12 students with disabilities were 

denied FAPE for months 

and even more than one 

year (the length of the 

pandemic). Many students 

with disabilities who rely 

upon in-person supports 

experienced substantial 

regression in their 

behaviors and educational 

goals.497

Many students with 

disabilities, including 

not only K-12 students but also students with 

disabilities at colleges and universities, struggled 

to engage and participate in their education once 

all learning moved to a virtual environment.498

Some schools failed to ensure that their remote 

educational programs and materials were 

accessible to students with disabilities, including 

students who are Deaf 

or Hard of Hearing, 

students who have 

low vision or are blind, 

students with learning 

or attention disabilities, 

and students with 

psychiatric disabilities.499

A survey of more than

30,000 students at 

nine universities found 

that college students 

with disabilities were 

less likely during the 

pandemic to feel that 

they “belonged” at their 

schools, or that their institution supported them, 

compared to students without disabilities.500

These students with disabilities were also more 

likely to be experiencing food and housing 

insecurity.501 As the 

pandemic continued, 

disability resource 

professionals—staff 

who ensure access 

and reasonable 

accommodations 

at colleges and 

universities—faced 

budget cuts, in some 

cases triggering 

layoffs.502

Some students with disabilities flourished 

in the remote classroom or experienced 

unexpected benefits. Some students with 

disabilities that affect their social and emotional 

The onset of the pandemic and 

remote learning for K-12 students 

triggered the abrupt cessation, 

often for months, of essential 

services and supports that are 

typically provided to students with 

disabilities in person or on school 

campuses, such as occupational 

therapy, speech and language 

therapy, behavioral and mental 

health supports, small group 

instruction, and one-on-one aides

A survey of more than 30,000 

students at nine universities 

found that college students with 

disabilities were less likely during 

the pandemic to feel that they 

“belonged” at their schools, or that 

their institution supported them, 

compared to students without 

disabilities

The Impact of COVID-19 on People with Disabilities 137
functioning experienced decreased social 

anxiety in the virtual learning environment and 

were able to participate more freely.503 Some 

students with disabilities had fewer challenging 

behaviors while learning from home because 

they faced fewer transitions in location and 

activity. Remote education also benefited some 

students with disabilities who rely on attendants, 

because it made it easier for these individuals to 

go off-camera when they needed to engage in 

personal care.

As a result of the pandemic and the gaps 

in the federal response to COVID, many K-12 

students with disabilities experienced an 

extended exclusion from FAPE, and now need 

compensatory education to recover and regain 

skills they have lost. Students with disabilities 

at all levels including K-12 and postsecondary 

experienced barriers in remote educational 

programs and activities, including discrimination 

and denials of effective communication and 

reasonable accommodations.

The Heavy Impact of the Pandemic 

on Low-Income Families with 

Children with Disabilities

Children with disabilities disproportionately live in 

low-income households.504 These children, often 

children of color with disabilities, experienced 

particularly severe barriers to education during 

the pandemic. Many low-income parents lost 

their jobs or had work hours decreased after 

COVID-19 hit, and they struggled to feed their 

families.505 Among low-income families, families 

of Black, Hispanic/Latino, and Native American 

children were more likely to experience income 

loss and food insecurity.506 Parents who retained 

employment often had to work in person,507

preventing them from providing their children 

with at-home supports for remote learning. 

Many low-income families did not have reliable 

internet, appropriate computers, or an area free 

of distraction for distance learning.508

A survey of 1,000 low-income families in 

Tulsa, Oklahoma, found that opportunities 

for learning shrank dramatically with the shift 

to remote instruction, especially for children 

with disabilities.509 Low-income parents of 

children with disabilities were more likely than 

other low-income parents to report problems 

with distance learning (83 percent versus 

63 percent).510 And almost half of low-income 

parents of children with and without disabilities 

reported that their children experienced 

increased emotional and behavioral problems 

during the pandemic.511

Broadband Technology, Computer 

Equipment, and Related Supports

When the pandemic hit, many students with 

disabilities were unable to access remote 

education due to technology barriers, including 

poor internet connections, outdated equipment, 

and difficulties with accessing and navigating 

online platforms.512 Some parents of students 

with and without disabilities were reported 

to child welfare agencies when their children 

did not participate in remote education and 

were found truant, even though in many cases 

the absences were related to technology, 

disabilities, lack of supports, the competing 

demands of the pandemic, or combinations of 

these factors.513

Many students with disabilities, including 

children with learning, attention, and behavioral 

disabilities, struggled to focus and learn through 

a computer screen.514 The consequences for 

students with disabilities, and particularly 

138 National Council on Disability
students of color with disabilities, were at times 

dire. Grace, a 15-year-old Black girl in Michigan 

with Attention Deficit Hyperactivity Disorder 

(ADHD), spent 78 days in juvenile detention 

when her probation was revoked for her not 

completing her online work.515 She reported 

feeling unmotivated and overwhelmed by online 

learning and got easily distracted without live 

instruction or structure.

Access to equipment and connectivity slowly 

improved as the pandemic continued, but 

barriers persisted.516 And the primary response 

to the “digital divide” was for school districts to 

distribute tablets and hotspots. While this was 

an essential intervention, it did not represent 

a permanent solution. Tablets do not have the 

same level of functionality as laptops, and 

hotspots—which can be slow and unreliable—are 

not a substitute for high-speed connection to the 

internet.517

Reasonable Accommodations, 

Supports, and Accessibility in 

Remote Education

Many students with disabilities have disabilityrelated barriers to learning in a remote 

environment. During the pandemic, some 

K-12 students with disabilities needed inperson supports such as one-on-one aides 

to prompt and sustain their attention to onscreen lessons. While in some cases this was 

the student’s parent or family member, some 

families were unable to perform this role for 

a variety of reasons, including competing 

The Impact of COVID-19 on People with Disabilities 139
employment necessary to maintain basic 

human needs such as food and housing.518

Some families needed in-person supports from 

outside the family, but these were denied by 

school districts.519

Some students with disabilities experienced 

disability-related conduct during remote 

sessions; sometimes these students were 

removed from the digital “room” without 

appropriate procedures or documentation for 

the removal.520 Some students with disabilities 

could not participate with their camera turned 

on, including because of disruptive anxiety or 

other disability-related conditions, or due to 

aspects of their home environments. Despite 

such equity concerns, 

an October 2020 survey 

found that most K-12 

teachers, principals, 

and district leaders 

required cameras to be 

turned on during remote 

sessions, and imposed 

consequences—including losing points and 

being marked absent—if students turned them 

off.521 And as described above, some students 

with disabilities were reported as “truant” when 

they did not log in to class, including when this 

occurred because of disability-related barriers in 

accessing the virtual classroom.

Students with disabilities faced barriers when 

education moved online, because the digital 

platforms and related digital documents were 

not accessible. Students who are blind need 

audio description, sound options for verification, 

adjustments to increase font size, type, and color, 

magnification that does not destroy the integrity 

of the text or page, and compatibility with 

assistive technology such as screen readers.522

Students who use screen readers or Braille 

translation devices such as BrailleNote need 

accessible documents, but often did not receive 

them.523

Students who are Deaf or Hard of Hearing, 

and students with other disabilities, need 

accurate real-time captioning. Students with 

disabilities often need transcripts of remote 

sessions, including transcripts that can be 

converted into other formats such as large 

print or Braille. The availability of captions 

and transcripts for all students advances the 

principles of universal design.524

During the pandemic, many colleges and 

schools relied on automatic captioning to convert 

speech into text for 

students who need 

captions in class.525 While 

automatic captioning 

has improved, it does 

not offer many functions 

critical to the classroom 

setting such as proper 

grammar and punctuation markers, identification 

of multiple speakers and changes in speakers, 

and accurate captioning of technical vocabulary, 

jargon, and proper nouns. Automatic captioning 

does not allow for clarification or corrections.526

In many educational settings, students needed a 

professional captioner.

Students who are Deaf and who communicate 

using sign language need sign language 

interpreters integrated into the video platform. 

To see and understand the interpreter, Deaf 

students need to be able to view the speaker and 

the interpreter on the computer screen in larger 

boxes, and to reduce the size of the other video 

participants. These features were not available 

during much of the pandemic.527

Students with disabilities faced 

barriers when education moved 

online, because the digital platforms 

and related digital documents were 

not accessible

140 National Council on Disability
Students with various disabilities may have 

needed other adjustments to remote educational 

platforms. Examples include having participants 

speak one at a time, ensuring that participants 

not speaking are on “mute,” and having 

instructors on video, with proper lighting and 

their faces clearly visible in the frame, to facilitate 

lip reading or perception of other visual cues.528

In-Person Services and Supports

During the pandemic, K-12 students with 

disabilities were particularly harmed by the 

cessation of virtually all services and supports 

that are typically provided to students with 

disabilities in person. Many students went 

months without essential 

services and supports 

such as occupational 

therapy, speech and 

language therapy, 

behavioral and mental 

health supports, small 

group instruction, and 

one-on-one aides. A 

review by GAO of the 

COVID-19 distance 

learning plans of 15 school districts found that 

none included details on how the specialized 

instruction or related services specified in 

students’ IEPs would be provided.529

For some students with disabilities, access 

to a free and appropriate public education and 

to equal employment opportunity thereafter is 

only possible with in-person instruction and/

or supports. Many school districts across the 

country established and maintained in-person 

instruction for small cohorts of students with 

disabilities who could not learn in a remote 

environment. Some provided at-home aides for 

students with disabilities who needed support. 

However, other school districts refused to 

provide any in-person instruction or supports 

for months or for as long as one year during 

the pandemic.530 Many parents did not have the 

specialized training, or the time, to fill these roles. 

The result for many students with disabilities was 

substantial regression.531

Children with disabilities also experienced 

mental health crises during shelter in place, 

exacerbated by the lack of in-person mental 

health and behavioral health services. According 

to the CMS, between March and May 2020, 

children on Medicaid received 44 percent fewer 

outpatient mental health services—including 

therapy and in-home 

support—compared to 

the same time period in 

2019.532 It is challenging 

to provide effective 

therapy in the remote 

environment to children 

with mental health 

disabilities. Many children 

do not have a private 

space with appropriate 

technology (including broadband internet) to 

speak confidentially with a therapist. Children 

with mental health disabilities may struggle with 

attention, behavioral regulation, and dissociation, 

making it more difficult for clinicians to 

therapeutically engage through a video screen.533

Children with disabilities experienced significantly 

more mental health problems such as fear and 

anxiety than other children.534

With fewer effective outpatient options, 

children with disabilities increasingly ended up 

in emergency rooms, psychiatric hospitals, and 

residential treatment, and even jail.535 Across 

A review by GAO of the COVID-19 

distance learning plans of 15 school 

districts found that none included 

details on how the specialized 

instruction or related services 

specified in students’ IEPs would be 

provided

The Impact of COVID-19 on People with Disabilities 141
the country, journalists profiled the devastating 

impact of the pandemic on families of children 

with significant disabilities who needed inperson supports. For example, in Philadelphia, 

Aaron and Syrita Powers parent three children 

with disabilities, a 12-year-old girl with autism, 

a 10-year-old nonverbal girl with intellectual 

disability, and an eight-year-old nonverbal girl with 

autism. Before the pandemic, the three children 

attended school every day, and were supported in 

their educational goals by therapies, tutoring, and 

paraprofessionals. The oldest child attended an 

afterschool program.536 That all changed abruptly 

when schools closed in March 2020. Because of 

a lack of technology available to students, online 

teacher-led instruction 

did not begin until May 

2020. Even when online 

school began, it was 

not effective for the two 

younger children due to 

their disabilities. Some 

therapies were offered 

by the district, but only 

remotely, which did not work for the younger 

children. And the oldest child was distracted 

from her online education by the needs of her 

siblings. With the demands of parenting during 

the pandemic, Aaron and Syrita skipped doctors’ 

appointments for their own disabilities (kidney 

disease and fibromyalgia).537

All three children regressed substantially 

during the pandemic, when they did not attend 

in-person school for more than one year. The two 

younger children lost their toilet training, and their 

educational goals—holding a pencil, writing some 

words, sitting down, and following instructions—

deteriorated. The oldest child lost ground in math 

and social skills and began carrying and speaking 

with a stuffed animal. Even after one month of 

in-person instruction beginning in April 2021, there 

was no change in the youngest child’s regression.538

Outside of Atlanta, 17-year-old Lindsay who 

has autism experienced a mental health crisis 

when schools closed. Without the routine of 

in-person school and the support of in-person 

therapies, Lindsay began walking out of the 

house and wandering several times a week. Her 

mother, a nurse, would try to call the mental 

health crisis line to seek a crisis team, but would 

often be put on hold for 40 or 50 minutes. After 

an incident in which Lindsay walked into a Family 

Dollar retail store in a t-shirt and underwear to 

get Doritos, she ended up tackled and handcuffed 

by police, and spent 

most of a night in jail until 

her mother was able to 

post bail.539

In Los Angeles, Luis 

Martinez, an 11-year-old 

nonverbal fifth grader 

with autism, rarely 

missed a day of school 

before the pandemic, and enjoyed seeing his 

friends and teachers. But after ten months of 

remote education, Luis stopped looking at his 

tablet or making any attempt to interact with his 

peers online. He began acting out nearly every 

day, scratching and biting himself and members 

of his family out of frustration.540

In Whittier, California, six-year-old Mateo has 

Phelan-McDermid syndrome, a rare genetic 

condition causing developmental delays and 

limited fine motor skills. He has difficulty walking 

and is nonverbal, and usually uses a device to 

communicate. During the in-person portion of the 

school year, he made progress working with his 

teacher and speech, occupational, and physical 

With fewer effective outpatient 

options, children with disabilities 

increasingly ended up in 

emergency rooms, psychiatric 

hospitals, and residential treatment, 

and even jail

142 National Council on Disability
therapists. After the pandemic hit, his progress 

stalled. His speech therapy, which was previously 

three times a week for half an hour each time, 

was cut to once a week for about 15 minutes. 

He stopped learning new vocabulary, tasks, or 

modes of communication.541

On May 6, 2021, a parent testified about 

his experiences during the pandemic with 

his nine-year-old son with autism and ADHD, 

and his nine-year-old daughter with cerebral 

palsy and intellectual disability, before the U.S. 

House of Representatives Subcommittee on 

Early Childhood, Elementary, and Secondary 

Education.542 He described how his children 

regressed and deteriorated with no in-person 

services, and his son ended up suicidal and 

hospitalized. Because his daughter cannot 

engage in learning over an iPad, his wife had to 

quit her job to stay home to provide schooling. 

When schools opened part-time in March 2021, 

his son was a whole year behind in reading. 

So far, the school has only offered this child 

30 minutes of extra support per week.

These are just a handful of accounts of the 

experiences of thousands of families of children 

with disabilities. These stories and others attest 

to how the effects of the pandemic will be long 

lasting for families of children with disabilities 

who need in-person education and supports to 

learn and thrive in the community.

Sustained access to compensatory education 

will be critical for students with disabilities who 

needed in-person supports and services, but who 

did not get them during the pandemic.

The Pandemic’s Impact on Native 

American Students with Disabilities

Native American students with disabilities served 

through the Bureau of Indian Education (BIE) 

received few educational services during the 

pandemic, effectively losing more than one year 

of education. Throughout the pandemic, BIE 

failed to issue comprehensive distance learning 

guidance to BIE schools, despite a need for such 

guidance.543 Instead, in August 2020, BIE issued 

a reopening guide for the 2020–2021 school 

year focused on in-person school, even though 

COVID-19 infection rates were high in rural 

Native communities, and nearly all schools were 

closing or planning for distance learning for the 

fall of 2020.544

The BIE and other Interior offices provided 

over 7,000 hotspots to students to improve home 

internet access, but they did not order laptops 

for most students until September 2020. Most 

BIE schools received laptops from late October 

2020 to early January 2021, and some laptops 

still had not been delivered as of late March 2021. 

Once laptops were delivered, schools faced 

challenges configuring them, leading to further 

delays in distributing them to students. By the 

end of December 2020, more than 80 percent 

of the laptops had not been delivered by schools 

to students. As a result, most BIE students who 

received laptops did not get them until several 

months after the school year began.545

While these failures in pandemic response 

affected all students, BIE students with 

disabilities also did not receive the services 

and supports required by IDEA. The National 

Indian Education Association (NIEA) found 

that 21 percent of BIE schools closed during 

COVID-19 and did not provide any services 

to their students, including students with 

disabilities. Thirty-four percent of BIE schools sent 

home learning packets for their students to work 

on during school closures, and 30 percent sent 

students technology devices to use at home.546

The Impact of COVID-19 on People with Disabilities 143
The relatively high percentage of BIE 

schools using learning packets correlates to the 

substantially lower level of connectivity in Native 

American communities. According to a survey by 

the NIEA, 40 percent of 

students who attended 

BIE schools reported that 

they had no access to 

internet services during 

school closures. Another 

34 percent reported that 

they used a cell phone 

for their internet service. 

Only about 21 percent 

of BIE students had 

access to broadband 

internet.547 The American 

Community Survey 

also found that fewer than half of households 

in many BIE school communities had access to 

broadband internet prior to the pandemic, and 

that connectivity is particularly limited on the 

Navajo Nation Reservation, the site of more 

than one-third of BIE schools.548 Internet access 

was higher for Native 

American students who 

were in public school, 

but still much lower than 

for non-Native students, 

with 16 percent reporting 

no access to the internet 

during school closures 

and 22 percent accessing 

the internet through a 

cell phone.549

During the pandemic, Native American 

households had fewer resources to pay for 

internet or cell phone data during the pandemic. 

Families were struggling to secure food, as 

sources of revenue were closed, and children 

were not eating any meals at school.550 Moreover, 

providing hotspots and laptops could not resolve 

barriers to connectivity. Native American families 

in remote tribal areas 

may not have electric 

service at all and must 

depend on generators 

to power all appliances 

that require electricity, 

including laptops and 

hotspots.551 Moreover, 

hotspots do not function 

in rural areas without cell 

coverage.552

Educators who 

attempted to serve 

Native students with 

disabilities in these challenging environments 

reported using a variety of approaches. Some 

examples included: sending text messages to 

family members with ideas for gross and fine 

motor activities that could be done at home; 

having the speech pathologist, occupational 

therapist, and physical 

therapist provide 

consultation to the family 

through phone calls, and 

then sending parents 

hard copies of suggested 

activities to do at home 

with their children; 

sending special education 

and general education 

packets to the student’s 

home, or delivering these packets by school bus; 

making materials available for pickup or delivering 

equipment such as walkers, communication 

devices, and assistive technology; and conducting 

21 percent of [Bureau of Indian 

Education] schools closed during 

COVID-19 and did not provide any 

services to their students, including 

students with disabilities. Thirty-four

percent of BIE schools sent home 

learning packets for their students 

to work on during school closures, 

and 30 percent sent students 

technology devices to use at home

During the pandemic, Native 

American households had fewer 

resources to pay for internet or cell 

phone data during the pandemic

Families were struggling to secure 

food, as sources of revenue were 

closed, and children were not eating 

any meals at school

144 National Council on Disability
IEPs by phone. Where families and children 

had connectivity, special education teachers 

and related service providers conducted short 

classes or sessions online, and IEPs could be 

conducted by videoconference. In some cases, 

parents declined special educational services or 

requested that teachers and service providers 

stop calling them, which may have been due to 

concerns about increased use of the family’s cell 

phone minutes.553

The efforts of some dedicated educators did 

not change the fact that for over a year many 

Native American students with disabilities 

received none of the services in their IEPs. 

Moreover, the failure of BIE to provide or ensure 

necessary IDEA services and supports predates 

the pandemic. In an analysis of BIE school 

documentation from late 2017 and early 2018, the 

GAO found that the BIE either did not provide or 

did not document 38 percent of special education 

and related service time for students with 

disabilities.554 The agency also failed to comply 

with an obligation to verify that IDEA services 

were provided at all BIE schools each year, and 

instead only checked services at one-third of 

schools.555 The BIE failed to provide required 

technical assistance to 14 schools that were 

determined to be at high risk of not complying 

with IDEA, and provided required monitoring 

reports late.556 The BIE acknowledged that its 

field staff were not qualified to support schools 

on their IDEA obligations.557

Summary of Findings

■ The federal, state, and local response 

to COVID-19 left behind many K-12 and 

postsecondary students with disabilities.

■ During the shelter-in-place period, many K-12 

students with disabilities did not receive 

FAPE over an extended period of time and 

went months without essential services 

and supports that are usually provided in 

person. Many students with disabilities did 

not learn and experienced regression in their 

behavioral and educational goals.

■ Children with disabilities in low-income 

households, and particularly children of color 

with disabilities in low-income households, 

experienced particularly severe barriers to 

remote education during the pandemic.

■ Many students with disabilities were 

unable to access remote education due to 

technology barriers, including lack of access 

to broadband internet and appropriate 

equipment.

■ While some students with disabilities 

flourished in the remote learning environment, 

many students with disabilities struggled 

to focus and learn through a computer 

screen. Punitive responses to students with 

disabilities who did not attend or engage in 

remote education were counterproductive 

and had particularly dire consequences for 

students of color with disabilities.

■ At all levels including K-12 and postsecondary, 

students who are Deaf, Hard of Hearing, 

blind, or with other disabilities faced access 

barriers in digital platforms and related 

digital documents.

■ Without access to effective mental health 

supports, including in-person supports, 

some children with disabilities experienced 

mental health crises during the COVID-19 

pandemic, ending up in emergency rooms, 

psychiatric hospitals, residential treatment, 

and even jail.

The Impact of COVID-19 on People with Disabilities 145
■ Native American students with disabilities 

served through the BIE received few 

educational services during the pandemic, 

effectively losing more than one year of 

education.

■ Many students with disabilities now require 

compensatory education to allow them 

to recover and regain skills lost during the 

COVID-19 pandemic, or to learn them for 

the first time.

Without better guidance, planning, and 

investment before the next national public 

health crisis or other emergency, students 

with disabilities will again experience 

the denial of FAPE and equal education 

opportunity.

Recommendations

To ensure the United States is prepared to 

continue providing special education services 

and supports needed by students with disabilities 

to maintain educational benefit during a future 

pandemic or similar national health crisis, NCD 

recommends the following actions:

Recommendations for Congress

Congress should:

■ Ensure that new or amended legislative proposals.

■ Include funds dedicated to compensatory education for students with disabilities who 

were denied necessary educational services and supports during the pandemic and who 

have experienced disruption and regression in their behavioral and educational goals. 

Priority should be given to compensatory education for children with disabilities living in 

low-income families, children with disabilities who needed—but did not receive—in-person 

instruction and supports, and Native American children with disabilities.

■ Include funds dedicated to making high-speed broadband internet available to and 

affordable for everyone, and particularly for low-income families, homeless families, and 

families in rural and other areas where high-speed internet access is not consistently 

available. Federal recovery efforts must continue to expand connectivity in Native American 

communities, with a focus on BIE school communities and American Indian reservations. 

Funds should be allocated soon to ensure that every student has an appropriate laptop or 

tablet for remote education so that education is not interrupted by another emergency.

■ Include funds dedicated to the U.S. Departments of Education and Justice, and to state 

departments of education, for prompt and effective complaint processing, including free 

voluntary mediation, for complaints of denial of FAPE and disability discrimination in 

education during the COVID-19 pandemic.

146 National Council on Disability
Recommendations for Federal Agencies

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. Given the extended crisis and national 

emergency caused by the pandemic, the extent and duration of gaps in educational 

services, and the known impacts on children with disabilities, families should have a 

right to “opt in” to compensatory education without any requirement of an extensive 

individualized factual showing. Sustained access to compensatory education will be critical 

for many students with disabilities because they were virtually excluded from all education 

for more than one year.

■ Direct school districts to structure compensatory education to provide families with the 

option to receive additional educational services over several years following the pandemic. 

Such services should extend past age 22 if the student needs them to make up for the 

education lost.

■ Direct school districts to assess and support access to computer technology for students 

with disabilities as part of the IEP or Section 504 plan, and should clarify that computer 

equipment, broadband internet, and computer training are appropriate IEP services.

■ Direct school districts to provide in-person services and supports as necessary for 

students with disabilities to access FAPE and to prevent regression, mental health 

crises, institutionalization, and family separation, even during a pandemic or public health 

emergency.

■ Affirm that removals from a digital classroom are subject to the same procedures and 

documentation requirements that apply to removals from a regular classroom. ED should 

direct schools not to remove students with disabilities from remote sessions for purported 

misconduct without considering reasonable accommodations and supports. These 

principles should be established and made known to parents in the event of a future public 

health emergency.

■ Prioritize resolution of complaints of denial of FAPE and disability discrimination that 

occurred during the COVID-19 pandemic, including through the use of free voluntary 

mediation.

(continued)

The Impact of COVID-19 on People with Disabilities 147
Recommendations for Federal Agencies: continued

ED and DOJ should:

■ Issue joint guidance to school districts and child welfare agencies directing them to 

intervene in a problem-solving rather than punitive manner to address student truancy from 

remote education caused by disabilities, lack of technology, or lack of supports.

■ Issue a joint guidance document outlining the elements of accessible remote education 

for students with disabilities. The guidance should review accessibility requirements for 

digital platforms and digital documents and emphasize the necessity of designing remote 

education to be fully accessible to students who are Deaf, Hard of Hearing, and/or blind, 

or who have other disabilities. The guidance should review necessary auxiliary aids and 

services such as real-time captioning, accessible transcripts, sign language interpreting, 

and alternative formats. The guidance should specify the educational contexts in which 

automatic captioning is not appropriate and detail the features necessary to properly 

integrate sign language interpreters into a video platform.

Federal Communications Commission (FCC) should:

■ Take affirmative steps to make high-speed broadband internet available to and affordable 

for everyone, including Native Americans and people with disabilities living in rural areas. 

The FCC’s Lifeline program should be expanded to provide high-speed broadband internet 

to low-income households for $10.00 a month.

Congress should task GAO with:

■ Continuing to audit the performance of the BIE during and after the pandemic, including for 

children with disabilities.

ED and U.S. Department of the Interior should:

■ Cooperatively develop, and have the BIE implement, a plan for bringing BIE schools into 

compliance with the IDEA and Section 504 and delivering compensatory education for 

Native American children with disabilities who were impacted by the pandemic.

148 National Council on Disability
Recommendations for States and State Agencies

State Education Agencies 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. School districts should offer flexible options 

for receiving compensatory education over several years following the pandemic.

■ Direct school districts to provide in-person services and supports necessary for students 

with disabilities who require them to receive FAPE and to prevent regression, mental 

health crises, institutionalization, and family separation, even during a pandemic or public 

health emergency.

■ Direct school districts that student removals from a digital classroom are subject to the 

same procedures and documentation requirements that apply to removals from an inperson classroom.

■ Prioritize resolution of complaints of denial of FAPE and disability discrimination that 

occurred during the COVID-19 pandemic, including through the use of free voluntary 

mediation.

■ Work with appropriate federal and state agencies to develop and implement plans for 

ensuring timely and effective delivery of special education services to Native American 

children in geographic areas where those children can attend public schools or BIE schools.

The Impact of COVID-19 on People with Disabilities 149
150 National Council on Disability
Chapter 5: Employment and COVID-19

Employment of People with 

Disabilities Before and After the 

Pandemic

T he passage of the ADA more than 

30 years ago advanced a vision for people 

with disabilities that included among its 

core principles economic self-sufficiency and 

full participation in the mainstream economy. 

The ADA instituted new requirements for 

how employers were required to evaluate the 

capabilities of people 

with disabilities, and 

spurred the development 

of accommodations, 

services, and supports 

for individuals with 

significant support needs 

to succeed in many work 

environments. Since 

its enactment, barriers to employment have 

been lifted for millions, and many individuals 

with disabilities have been able to secure 

employment.558

At the same time, a large proportion of 

people with disabilities remain “persistently 

locked out of employment,”559 and people with 

disabilities disproportionately live in poverty.560

Prior to the COVID-19 pandemic, nearly twothirds of working-age Americans with disabilities 

were left out of the labor market altogether.561

Fewer than one-third of working-age people 

with disabilities had a job, compared to nearly 

three quarters of working-age people without 

disabilities.562 This employment gap of 40 or more 

points has remained steady for years.563 Federal 

investments in vocational services, and tax 

credits for employers that hire and retain people 

with disabilities,564 have not been adequate 

to significantly alter employment and labor 

participation rates for people with disabilities.

Many people with 

disabilities excluded 

from the labor market 

are in a “poverty trap”; 

they rely on federal 

public assistance 

programs, and cannot 

work without losing 

essential healthcare.565

For example, people 

with disabilities who need Medicaid to pay for 

necessary services like personal care attendants 

face an abrupt loss of this life-sustaining coverage 

should their earnings exceed certain modest 

caps.566 Congressional efforts to reduce the 

barriers to work imposed by the SSA programs 

have resulted in complex exemptions that have 

achieved only very small positive effects.567

Individuals with disabilities who rely upon SSI 

receive a benefit amount below the federal 

Many people with disabilities 

excluded from the labor market are 

in a “poverty trap”; they rely on 

federal public assistance programs, 

and cannot work without losing 

essential healthcare

The Impact of COVID-19 on People with Disabilities 151
poverty level, and more than two-fifths of SSI 

beneficiaries live below the poverty line.568

The unemployment rate for persons with a 

disability, at 12.6 percent in 2020, increased by 5.3 

percentage points from 2019. Their jobless rate 

continued to be much higher than the rate for those 

without a disability. (Unemployed persons are those 

who did not have a job, were available for work, and 

were actively looking for a job in the four weeks 

preceding the survey.)569 The 2019 unemployment 

rate for persons without a disability increased by 

4.4 percentage points to 7.9 percent in 2020. In 

2020, 17.9 percent of persons with a disability were 

employed, down from 19.3 percent in 2019.570 In 

contrast, 61.8 percent of people without a disability 

were employed in 2020, down from 66.3 percent 

in the prior year. In 2020, 

persons with a disability 

were more likely to work 

in service occupations 

than those with no 

disability (18.0 percent, 

compared with 15.4 

percent). Workers with 

a disability were also more likely than those with 

no disability to work in production, transportation, 

and material moving occupations (14.9 percent, 

compared with 12.2 percent). Persons with a 

disability were less likely to work in management, 

professional, and related occupations than those 

without a disability (36.1 percent, compared with 

43.3 percent),571 a fact that closely related to their 

ability to telework—as the ability to telework was 

far greater in these occupations.

These significant problems of exclusion 

and unemployment for people with disabilities 

have persisted throughout a time period that 

has otherwise been characterized by a rapid 

pace of innovation and disruptive changes in the 

American workplace—including greater flexibilities, 

technology, and diversity—and the recovery 

from the Great Recession to the lowest overall 

unemployment rate in decades.572 Emerging 

employment opportunities in an increasingly digital 

world have not translated into more jobs for people 

with disabilities. The fastest growing and most 

dynamic technology-based industries have the 

poorest representation of people with disabilities.573

The sustained failure to fund and implement 

the IDEA exacerbates and contributes to the 

employment gap experienced by people with 

disabilities. Young people with disabilities are 

twice as likely as their peers without disabilities 

to have no high school diploma, leaving them 

unqualified for many jobs.574 Only 16.1 percent of 

people with disabilities 

earn a bachelor’s degree 

or more, compared to 

39.2 percent of people 

without disabilities.575

These failures in 

education translate 

into exclusion from 

employment for young adults with disabilities. 

In 2019, before the onset of the pandemic, 40.2 

percent of young people with disabilities ages 

20–24 years were employed, as compared to 

73.4 percent of their peers without disabilities.576

One year out of school, only 17 percent of youth 

with intellectual and developmental disabilities 

and 12 percent of youth with multiple disabilities 

were employed.577 Many of these youth are made 

to participate in school transition programs where 

they are trained to perform manual tasks. These 

youth are often referred to sheltered workshops 

directly from school, where they earn far less 

than the minimum wage under section 14(c) of 

the Fair Labor Standards Act.578

The fastest growing and most 

dynamic technology-based 

industries have the poorest 

representation of people with 

disabilities

152 National Council on Disability
The onset of the COVID-19 pandemic 

triggered a massive decline in employment, and 

the initial hit had a disproportionate impact on 

people with disabilities. By the end of April 2020, 

nearly 1 million people with disabilities lost their 

jobs, representing about 

20 percent of working 

people with disabilities. 

By comparison, 

14 percent of people 

without disabilities lost 

their jobs.579

School closures forced 

by the pandemic also 

had a disproportionate 

impact on young people with disabilities, who 

were depending upon transition and other IDEA 

services to prepare to leave school and enter the 

workforce. These services are typically provided in 

person to students with disabilities. With school 

days shortened and instruction moved to remote 

platforms, school districts struggled to deliver 

required IDEA services.580

Many states and districts 

failed to plan for or 

provide postsecondary 

preemployment 

transition services 

during the COVID-19 

pandemic.581 Although 

the U.S. Department of 

Education stated that 

state departments of 

rehabilitation must continue to make “good faith 

and reasonable efforts” during the pandemic 

to provide preemployment transition services 

to students with disabilities,582 deadlines were 

extended and in practice such services were 

interrupted and delayed.583

Against this backdrop of historic barriers, and 

the disproportionate impact of the pandemic, 

individual people with disabilities worked, 

teleworked, looked for work, lost their jobs, and 

navigated unemployment benefits. Many workers 

with disabilities have 

medical statuses putting 

them at risk for severe 

outcomes from COVID-19 

infection and struggled to 

balance their own safety 

with their need to go to 

work and earn a wage. 

Households including 

people with disabilities 

faced the multiple challenges of managing 

COVID-19 safety protocols, employment, job 

loss, caregiving, and remote K-12 learning.

“Reasonable accommodations” under the 

ADA helped some workers but not others. Gaps 

in civil rights protections became apparent. 

Some workers at sheltered workshops were 

denied unemployment 

benefits. And the 

extended duration of the 

pandemic pushed some 

workers with 

disabilities—and 

particularly older workers 

with disabilities—out 

of the labor market 

altogether.

Unemployment and Other Income 

and Job Supports

As discussed above, people with disabilities who 

rely upon SSI and/or SSDI frequently cannot 

work because their earnings would threaten their 

access to the essential healthcare coverage that is 

By the end of April 2020, nearly 

1 million people with disabilities 

lost their jobs, representing about 

20 percent of working people 

with disabilities. By comparison,

14 percent of people without 

disabilities lost their jobs

School closures forced by the 

pandemic also had a disproportionate 

impact on young people with 

disabilities, who were depending 

upon transition and other IDEA 

services to prepare to leave school 

and enter the workforce

The Impact of COVID-19 on People with Disabilities 153
provided through these assistance programs—a 

“poverty trap.” The COVID-19 relief packages have 

included three economic incentive payments 

totaling a maximum of $3,200 per individual. These 

incentive payments were available to beneficiaries 

of SSI and SSDI without the need for complicated 

paperwork and without jeopardizing their benefits. 

For individuals receiving the maximum federal SSI 

benefit of $783 per month, the three economic 

incentive payments raised their income by nearly 

35 percent and posed no threat to their healthcare 

coverage. The simplicity of this approach should 

be the standard for a reimagining of the “working 

while disabled” programs 

of the SSA, which are 

complex and have had 

only very small positive 

effects of bringing people 

with disabilities into 

employment.584

For people with 

disabilities facing 

unemployment during the 

pandemic, federal relief 

has been necessary but 

inadequate. The Paycheck 

Protection Program helped employers keep some 

people employed, particularly in the service 

industries in which many people with disabilities 

work. But many businesses closed and could not 

retain employees. It is difficult to know how many 

jobs were saved,585 and there is no way to know 

how many were held by people with disabilities.

People with disabilities who lost their 

jobs due to the pandemic could apply for 

unemployment, and people who quit because 

they have medical conditions making them 

vulnerable to severe effects from COVID-19, 

or because of a household member with such 

a medical condition, were generally able to 

access unemployment benefits.586 Many people 

with disabilities have medical conditions that 

made them more vulnerable to severe or lifethreatening outcomes from COVID-19.587 Access 

to unemployment benefits for people with 

disabilities vulnerable to COVID-19, and for their 

household members, was critical to the safety 

and economic stability of people with disabilities.

In response to the overall loss of employment 

due to the pandemic, the federal government, which 

ordinarily pays a share of state unemployment 

benefits, boosted the weekly amounts available 

to many beneficiaries, 

by $600 for about four 

months, and by $300 for 

longer, but provided no 

supplement at all during a 

gap in the fall and winter 

of 2020. Without the 

federal supplements, 

the unemployment 

benefit amounts varied 

greatly from state to 

state, and at best were 

modest (one-third to 

half of the individuals’ earnings, with a cap). This 

was particularly true for people with disabilities 

because the amount of unemployment benefits 

is based upon the amount of the person’s prior 

earnings, which is generally lower for people 

with disabilities.588 Federal pandemic support also 

included access to unemployment benefits for selfemployed, gig, freelance, and part-time workers. 

This was critical to many workers with disabilities, 

who are more likely than workers without disabilities 

to work for themselves or to work part-time.589

In many states, there were huge backlogs 

before people received unemployment benefits. 

[The] incentive payments were 

available to beneficiaries of SSI 

and SSDI without the need for 

complicated paperwork and without 

jeopardizing their benefits.... 

simplicity of this approach should 

be the standard for a reimagining 

of the “working while disabled” 

programs of the SSA 

154 National Council on Disability
Some people waited weeks to get their application 

processed. The waits were even longer for people 

who had to appeal the denial of benefits. It was 

virtually impossible for claimants to reach a benefits 

worker by phone to 

resolve issues such as 

delayed payments or 

website problems.590

Many people were 

deterred from filing or 

pursuing these claims 

due to these problems.591

While there are no formal 

studies yet, it is likely that those deterred from 

accessing the benefits owed to them included 

large numbers of people with disabilities, including 

people with cognitive, intellectual, developmental, 

and attention disabilities, who faced disabilityrelated barriers in accessing state unemployment 

benefit systems.592

Technology, Telework, and 

Remote Work

The pandemic created 

an unprecedented 

expansion in telework in 

certain sectors.593 Up to 

half of American workers 

teleworked during the 

pandemic, and remote 

workdays doubled.594 The 

expansion of telework had disparate effectiveness, 

positive and negative, on employees with 

disabilities.

The ability of employees with and without 

disabilities to telework was closely related to 

education level, which had a disproportionate 

impact on people with disabilities. Very few people 

with no education beyond high school were able 

to telework during the pandemic.595 Those who 

switched to telework reported higher income and 

education and better health than those who did 

not change their typical in-person work.596 Data 

shows that people with 

disabilities are less likely 

than people without 

disabilities to graduate 

from high school597 or 

to achieve a bachelor’s 

degree.598

The switch to telework 

was of great benefit to 

many people with disabilities who, prior to the 

pandemic, had advocated for more telework.599

Telework offered workers with disabilities more 

flexibility, and improved the ability to avoid barriers 

to working such as inadequate accessible public 

transportation.600 Many people with disabilities 

flourished in a digital environment, in some cases 

more so than in person. Among people with 

and without disabilities, more than half of those 

telecommuting during the 

pandemic said that, given 

a choice, they would 

want to keep working 

from home even after the 

pandemic.601 Many said 

that telework provided 

greater flexibility, and 

made it easier to balance 

work and family responsibilities.602

Expanded telework and remote work also 

offer the hope of increased job opportunity for the 

disproportionate number of people with disabilities 

who live in rural areas.603 Rates of employment are 

lower in rural areas for both people with and without 

disabilities, but the differences are more pronounced 

for people with disabilities.604 Computers and 

Telework offered workers with 

disabilities more flexibility, and 

improved the ability to avoid 

barriers to working such as 

inadequate accessible public 

transportation

Among people with and without 

disabilities, more than half of those 

telecommuting during the pandemic 

said that, given a choice, they would 

want to keep working from home 

even after the pandemic

The Impact of COVID-19 on People with Disabilities 155
high-speed internet must be viewed as necessary 

utilities for people with disabilities, particularly in 

rural areas.605 While the large majority of workingage people with disabilities have broadband internet, 

a computer, and a smart phone,606 people with 

disabilities experience a “digital divide” and are less 

likely than people without disabilities to have these 

technologies.607

Some employees with disabilities were not able 

to telework, including those with jobs that are not 

well suited for telework, those who are not allowed 

by their employers to telework, those for whom 

telework is not accessible, and those who have 

been laid off or whose jobs have been eliminated.608

Some supports, such as job coaching for people 

with intellectual disabilities, moved to digital 

platforms, which worked for some but not all people 

with disabilities in supported employment.609

Some employees with disabilities faced 

barriers to participating in employment-related 

meetings on Zoom or other digital platforms. 

These include some workers with medical 

conditions such as migraines who experience 

triggered or worsening symptoms when they 

look at a computer for too long or when they 

use digital meeting platforms,610 or employees 

with sensory disabilities, such as people who are 

Deaf, Hard of Hearing, blind, or low vision, who 

experienced barriers in using digital platforms. 

In many cases, accessibility can be feasibly 

provided in the platform by employers.611

In 2018, the federal government employed about 

269,000 people with disabilities.612 About 40,000 of 

them had “Targeted Disabilities,” defined as severe 

disabilities that are associated with high rates of 

unemployment and underemployment.613 Most 

federal workers who telecommuted during the 

pandemic, and who responded to an anonymous 

online survey, said that their productivity either 

increased or stayed the same since the pandemic 

began.614 Most said that they think that their 

agencies will have greater support for remote work 

even after the pandemic is over.615 On June 10, 

2021, the U.S. Office of Personnel Management 

together with the General Services Administration 

issued a guidance document to federal agencies on 

personnel policies for reentry that includes guidance 

on telework.616 The document states that the federal 

government’s nationwide operating status remains 

at “open with maximum telework flexibilities” for 

workers eligible for telework,617 and emphasizes the 

value of tools such as telework, remote work, and 

flexible work schedules to advance federal agency 

goals effectively and efficiently:

OPM/GSA Guidance on Telework

Agency leaders can leverage issues 

such as telework, remote work, and 

flexible work schedules as tools in 

their broader strategies for talent 

recruitment and retention, and for 

advancing diversity, equity, inclusion, 

and accessibility in the Federal 

workforce. . . . As shown during 

the pandemic, agencies can, where 

appropriate, deploy personnel policies 

such as telework, remote work, and 

flexible work schedules effectively and 

efficiently as strategic management 

tools for attracting, retaining, and 

engaging talent to advance agency 

missions, including in the context of 

changes in workplaces nationwide as a 

result of the pandemic and in response 

to long-term workforce trends.618

156 National Council on Disability
The document urges all agencies “to consider 

telework as part of overall strategic workforce 

planning,” and “to think of remote work as 

another option in their overall strategic workforce 

planning to assist them in competing for top 

talent.”619 The document states that decisions 

about telework should be based on job functions 

and other mission-related priorities, “rather than 

mere managerial preference.”620 Workers with 

disabilities have a greater opportunity to succeed 

when the flexibility of telework is incorporated 

into the ordinary policies and practices of the 

employer, which may now be the case for the 

federal government.

Reasonable Accommodations and 

Leaves of Absence

Telework

Prior to the COVID-19 pandemic, telework was 

used by relatively few employees—about 7 

percent of private sector workers and 4 percent 

of state and local workers.621 But when the 

pandemic hit, many employers had no choice but 

to switch to a largely remote work environment 

for all workers, with and without disabilities.622

Over the months of the pandemic, working 

from home became the “new normal” for 

many workers, with up to half of the workforce 

telecommuting.623 As a result of this experience, 

there is renewed interest in and acceptance of 

teleworking, which offers cost savings and a 

recruitment edge for employers and flexibility for 

workers, including individuals with disabilities.624

Employees with disabilities may benefit from the 

expansion of telework, which has resulted from 

economically common needs and experiences 

during the pandemic.625

EEOC has long recognized telework as a 

form of reasonable accommodation under the 

Americans with Disabilities Act.626 A qualified 

The Impact of COVID-19 on People with Disabilities 157
employee with a disability may be entitled to 

telework as an accommodation when they 

need the arrangement to perform the essential 

functions of the job and/or to enjoy equal 

employment opportunity.627 Telework can help 

remove a range of disability-related work barriers, 

including difficulties commuting to and from 

work, accessibility barriers or environmental 

issues at the worksite, and the need for regular 

access to private spaces or the bathroom to 

attend to disability treatment or symptoms.628

During the pandemic, telework was an essential 

reasonable accommodation for workers with 

disabilities who were at increased risk for severe 

illness or death from acquiring COVID-19. These 

disabilities included diabetes, HIV, cancer, stroke, 

Down syndrome, lung, heart, and liver diseases, 

and additional disabilities.629

At the same time, telework was not always 

easily granted by all employees everywhere. 

Disability Rights Texas, in testimony submitted 

to an April 2021 EEOC hearing, reported that it 

received dozens of employment-related intakes 

in Texas during the pandemic.630 More than 60 

percent involved an employer rejecting a telework 

accommodation. In some cases, the workers 

were permitted partial telework, but were 

refused a full-time remote assignment.631 Most of 

the intakes were from employees with a high-risk 

health condition or disability, but in some cases 

telework was needed by individuals who had a 

mental health condition that was exacerbated by 

the pandemic.632

These telework cases reflected a broad 

range of jobs. The most common setting was 

in the school context, both public and private, 

including teachers, professors, coaches, 

administrators, counselors, instructional aides, 

and support personnel. But many other parts of 

the economy were also represented, including 

real property management, real estate, state 

and local employees, mental health and 

addiction counselors, social workers, call center 

employees, and technical writers.633 Some 

employers required a certain date by which the 

person with a disability would stop teleworking 

and start working on site. But before vaccine 

appointments became widely available, there 

was no way to provide such a date.634

Where telework was refused as a reasonable 

accommodation during the pandemic, the 

employee with a disability was left with bad 

choices: requesting unpaid leave, quitting, or 

returning to work and risking acquiring the 

virus. Workers with disabilities who went 

on unpaid leave lost their usual income, and 

were more likely to lose their jobs altogether, 

particularly as the pandemic went on. There 

is also indication that women with disabilities 

and particularly women of color with disabilities 

were hit particularly hard by employers’ 

refusal to grant telework. Many women with 

“high-risk” disabilities were insufficiently 

accommodated in entry-level jobs and also 

had greater caregiving responsibilities. Now 

these workers must explain a significant gap 

in their employment history as they seek new 

employment.635 During fiscal year 2020, which 

included seven months of the pandemic, the 

EEOC saw a small uptick in the frequency of 

claims of disability discrimination (from 24,238 

to 24,324), while a number of other types of 

claims decreased.636

In 2020, the District Court for Massachusetts 

granted a preliminary injunction to allow the 

plaintiff, an assistance manager for a mental 

health provider, to continue to telework. The 

plaintiff had moderate asthma that imposed a 

158 National Council on Disability
greater risk of serious illness if they contracted 

COVID-19. The employee tried to return to 

the office but was not given PPE and was 

exposed to other people not wearing masks. 

The plaintiff returned to teleworking without the 

accommodation being approved and understood 

that they would be fired as a result; the lawsuit 

followed.637 After the court granted the injunction, 

the case settled.638 Many employees with 

disabilities do not have a lawyer to represent 

them in court.639

Some employers who allowed telework during 

the pandemic ended the practice once vaccines 

became available and directed employees to 

return to the workplace.640 But some workers 

with disabilities still needed telework as a 

reasonable accommodation, either because 

of the continued effects of the pandemic, or 

for other disability-related reasons. The EEOC 

has stated that the fact that an employer has 

permitted telecommuting for a period of time 

during the pandemic does not mean that it is a 

required reasonable accommodation.641

If, because of the experience during the 

pandemic, more employers offer flexible hours, 

remote work, and telework into the future, this 

could greatly expand employment opportunities 

for workers with disabilities.642 Telework can 

allow individuals with disabilities to work even 

if they have disability-based limitations to travel 

such as not driving due to disability, and despite 

ongoing access barriers in the transportation 

system.643 Increased availability of remote 

work could also improve job opportunity for 

the disproportionate number of people with 

disabilities who live in rural areas and who 

experience lower rates of unemployment.644

The success of the federal government in 

maintaining its efficiency and productivity during 

the 18 months that most federal employees 

teleworked should guide public policy with 

respect to telework.

Leaves of Absence

For people with disabilities who were vulnerable 

to severe outcomes from COVID-19 infection, 

accessing sufficient job-protected unpaid leave 

during the pandemic was difficult. While the 

Family and Medical Leave Act was helpful, it 

grants only 12 weeks of job-protected leave 

and is available only to a small portion of the 

workforce—those employees who work for large 

employers and who have one year’s tenure and 

sufficient hours.

The ADA may provide additional job-protected 

leave, but the case law is mixed. While some 

ADA case law is protective, other ADA cases 

hold that indefinite or lengthy leaves are not 

required as reasonable accommodations. For 

example, in Hwang v. Kansas State University, 

a professor with cancer requested an extension 

of leave beyond six months because there was 

a flu epidemic on campus and her immune 

system was compromised. She was fired. In 

2014, the court of appeals for the Tenth Circuit 

ruled that her termination was not disability 

discrimination.645 During the pandemic, leaves 

of absence sufficient to reach the end of the 

pandemic or the rollout of vaccines were typically 

both indefinite and lengthy.

Accommodations for People with 

COVID-19–Vulnerable Household 

Members

The pandemic revealed a substantial gap in civil 

rights protections: Many employees needed

reasonable accommodations such as telework, not 

because of their own vulnerability, but because 

The Impact of COVID-19 on People with Disabilities 159
they were household members and caregivers 

of people with disabilities who were vulnerable 

to severe effects from COVID-19 infection. There 

is no civil rights law that adequately protects this 

group of workers. According to EEOC guidance, 

employees without disabilities are not entitled to 

reasonable accommodations needed to protect a 

vulnerable household member or care recipient.646

Some of these 

household members 

and caretakers took 

unpaid leave. Some 

went to work and took 

the risk that they would 

spread the virus to the 

vulnerable person. Some 

quit. For those who took 

unpaid leave, leave was 

often not guaranteed or 

job-protected. As noted 

above, most employees 

are not covered by the 

Family and Medical Leave 

Act, and even those who are covered are only 

entitled to up to 12 weeks of unpaid leave.

Masks and Other COVID-19 Safety 

Protocols at Work

CDC recommended l cloth masks or other face 

coverings and social distancing for individuals 

older than two years during the pandemic, 

including people who were not medically at 

risk.647 During the pandemic, as a matter of basic 

workplace safety for all employees, employers 

should have monitored and enforced compliance 

with COVID-19 protocols such as masks and 

social distancing.

In addition, compliance with COVID-19 

protocols was a form of reasonable 

accommodation that was needed by some 

employees with disabilities during the pandemic. 

These included people who had conditions that 

made them vulnerable to severe effects from 

COVID-19 such that they could not safely work 

without masks and social distancing in place, 

as well as people who had anxiety disabilities 

or other conditions that made them extremely 

fearful of the coronavirus. 

Where requested by 

an employee with a 

disability as a reasonable 

accommodation, 

employers should have 

enforced safety protocols 

such as masks and social 

distancing.

Unfortunately, 

COVID-19 protocols 

including masks were 

resisted in some 

workplaces, sometimes 

because they have been 

harmfully politicized. In these environments, 

employees with disabilities had difficulties 

resolving their accommodation needs without 

facing harassment and hostility.648

At the same time, employers must also provide 

reasonable accommodations to employees 

who cannot wear masks or cannot wear them 

consistently or for long periods of time, due to 

their disabilities. Examples may include individuals 

with developmental or intellectual disabilities, 

including autistic people, who cannot tolerate 

masks, and people with mobility impairments who 

cannot independently put on or take off a mask. 

During a pandemic, under the ADA, employers 

must provide reasonable accommodations to all 

employees with disabilities, including employees 

Many employees needed 

reasonable accommodations such 

as telework, not because of their 

own vulnerability, but because 

they were household members 

and caregivers of people with 

disabilities who were vulnerable 

to severe effects from COVID-19 

infection. There is no civil rights law

that adequately protects this group 

of workers

160 National Council on Disability
with disabilities who have needs that appear to 

conflict (such as an employee with a disability 

who needed safety protocols in place due to 

their preexisting condition that made them 

vulnerable to severe effects from COVID-19, 

and a fellow employee with a disability who 

was not able to consistently wear a mask due 

to their developmental disability). This requires 

creativity and flexibility to 

reach safe and inclusive 

outcomes.649

Older Workers with 

Disabilities

Older workers with 

disabilities who have 

lost their jobs due to the 

pandemic face a high risk 

that they will never rejoin 

the workforce.650 Many 

of these workers have been or will be forced 

into early retirement, with the serious financial 

and other losses that accompany this change 

in status.651

During and after the Great Recession, it 

took older workers longer to find work.652

Older workers are more likely to suffer 

long-lasting negative consequences due to 

recessions, including job loss, pay cuts, loss of 

healthcare, poverty, and decreased longevity 

or life expectancy.653 The COVID-19 pandemic 

and resulting recession hit older people, 

especially older women, even harder than past 

recessions.654 Workers over age 55 experienced 

higher unemployment from the pandemic than 

midcareer workers and returned to work more 

slowly.655 Older workers who are Black, female, 

or lack a college degree experienced even higher 

rates of job loss.656

Even if a prior workplace reopens after being 

closed due to the pandemic, older employees 

with disabilities may not be called back to work 

with the others.657 This kind of discrimination is 

extremely difficult to demonstrate or remedy. 

Research shows that age discrimination in 

hiring increases during recessions, contributing 

to longer periods of unemployment for older 

workers.658 Age 

discrimination is also 

a significant barrier for 

older workers who look 

for temporary jobs to 

delay retirement.659

Some older workers 

with disabilities may 

have worked somewhere 

for a very long time 

before the pandemic, 

with reasonable 

accommodations and job supports in place 

(whether formal or informal).660 Once these 

tailored positions were lost due to the pandemic, 

they were extremely hard to recreate later. These 

workers may not be very knowledgeable about 

how to go about getting a job in the current reality. 

They may not be proficient at using computers 

and application portals to apply for jobs.

Older people also experience more severe 

aftereffects of COVID-19 infection. New or more 

severe disabilities are primary reasons that older 

workers with disabilities leave the labor force.661

Workers with new disabilities may have less 

ability to successfully advocate for reasonable 

accommodations at work, compared to 

individuals with long-standing, chronic disabilities 

who may better understand their rights.662 Robust 

and explicit accommodation programs can help 

keep older workers with disabilities on the job.663

Workers over age 55 experienced 

higher unemployment from the 

pandemic than midcareer workers 

and returned to work more slowly

Older workers who are Black, 

female, or lack a college degree 

experienced even higher rates of 

job loss

The Impact of COVID-19 on People with Disabilities 161
People with Disabilities Earning 

Subminimum Wage at Sheltered 

Workshops

Since 1938, Section 14(c) has allowed 

employees with disabilities to be paid less than 

the minimum wage under special certificates 

used to operate sheltered workshops. Some 

employees with disabilities earn as little as cents 

per hour.664 Section 14(c) creates a federally 

sanctioned segregated jobs system for people 

with disabilities, and is contrary to the civil 

rights principles of the ADA and its integration 

mandate.665 NCD has long recommended 

that Congress phase out Section 14(c) of the 

Fair Labor Standards 

Act as a policy relic 

from the 1930s, when 

discrimination was 

inevitable because 

service systems were 

based on a charity 

model, rather than 

empowerment and 

self-determination.666

NCD favors instead 

investment into training programs and 

competitive, integrated employment, including 

supported employment. The U.S. Commission 

on Civil Rights recently made the same 

recommendation.667 The Transformation to 

Competitive Integrated Employment Act (H.R. 

2373) would provide states and employers with 

resources to transition workers with disabilities 

into fully integrated and competitive jobs 

while phasing out the subminimum wage for 

individuals with disabilities.668

The onset of the pandemic caused many 

sheltered workshops to close. These congregate 

workplaces posed substantial health risks to 

workers with intellectual and developmental 

disabilities, who are at increased risk of severe 

illness and death from COVID-19.669 Many 

people with disabilities who worked in sheltered 

workshops under Section 14(c) of the Fair Labor 

Standards Act found that they were not eligible 

for unemployment when their work stopped due 

to the pandemic. This was because they were 

classified as “trainees” or recipients of services 

rather than as employees, and their employerprovider did not pay into the state unemployment 

system.670 These workers found themselves 

overlooked and disregarded while nondisabled 

workers were able to 

access unemployment 

benefits.

Many of these 

segregated programs 

have reopened or are 

slowly reopening.671 The 

ongoing recovery effort 

provides an opportunity 

for a substantial 

federal investment into 

developing integrated employment opportunities 

as alternatives to sheltered workshops.

Summary of Findings

■ Before the onset of the COVID-19 pandemic, 

nearly two-thirds of working-age Americans 

with disabilities were left out of the labor 

market altogether, caught in a “poverty 

trap” created by federal public assistance 

programs. People with disabilities who were 

working or looking for work experienced an 

unemployment rate more than twice that of 

people without disabilities.

Many people with disabilities who 

worked in sheltered workshops 

under Section 14(c) of the Fair Labor 

Standards Act found that they were 

not eligible for unemployment 

when their work stopped due to the 

pandemic

162 National Council on Disability
■ The onset of the COVID-19 pandemic 

triggered a massive decline in employment, 

and the initial losses were borne 

disproportionately by people with disabilities, 

with nearly 1 million people with disabilities—

about one in five—losing their jobs.

■ Young people with disabilities, who were 

already disproportionately excluded from the 

workforce, did not receive mandated IDEA 

services during the COVID-19 pandemic, 

including preemployment transition 

services.

■ The expansion of telework during the 

pandemic was of great benefit to many 

people with disabilities. It offered workers 

with disabilities more flexibility, and reduced 

barriers to working such as those associated 

with transportation.

■ While in many cases accessibility can 

be feasibly provided by employers in 

digital platforms such as Zoom, some 

employees with disabilities faced barriers to 

participating in remote employment–related 

meetings.

■ Some employees with disabilities were 

not able to telework during the pandemic, 

including those with jobs that were not 

well suited for telework, those who were 

not allowed by their employers to telework, 

those for whom telework is not accessible, 

and those who have been laid off or whose 

jobs have been eliminated.

■ Telework has long been recognized by the 

EEOC as a reasonable accommodation 

under the ADA. Telework can help remove 

disability-related work barriers, including 

difficulties commuting, accessibility barriers 

at the worksite, and the need for regular 

access to private spaces to attend to 

disability treatment or symptoms.

■ During the pandemic, telework was an 

essential reasonable accommodation 

for workers with disabilities who were 

at increased risk for severe illness or 

death from acquiring COVID-19. When 

telework was refused as a reasonable 

accommodation, these employees with 

disabilities were left with bad choices: quit, 

request unpaid leave, or return to work and 

risk acquiring the virus.

■ For people with disabilities who were 

vulnerable to severe outcomes from 

coronavirus infection, accessing sufficient 

job-protected unpaid leave during the 

pandemic was difficult because the leaves 

needed were long and often indefinite.

■ The pandemic revealed a substantial gap in 

civil rights protections: no federal civil rights 

law protected employees who needed 

a reasonable accommodation such as 

telework, not because of their own disability, 

but because they were household members 

and caregivers of people with disabilities 

who were vulnerable to severe effects from 

acquiring COVID-19.

■ The availability of benefits from the 

COVID-19 relief packages was critically 

important to the safety and economic 

stability of people with disabilities. These 

benefits included three EIPs that were made 

available to beneficiaries of SSI and SSDI 

without jeopardizing their benefits. These 

benefits included extended unemployment 

insurance, including for self-employed and 

The Impact of COVID-19 on People with Disabilities 163
part-time workers, with federal supplements 

of $300 or $600 during most weeks of the 

pandemic. The unemployment benefits were 

valuable to people with disabilities, who are 

more likely to have lower earnings, meaning 

that their unemployment benefit amounts 

were lower, and who are more likely to work 

for themselves or to work part-time.

■ State unemployment insurance claims 

systems experienced huge backlogs, and it 

is likely that those deterred from accessing 

the benefits owed to them included large 

numbers of people with disabilities.

■ The federal government maintained its 

efficiency and productivity during the 

18 months that most federal employees 

teleworked. If implemented, the June 

2021 guidance issued by the U.S. Office of 

Personnel Management and the General 

Services Administration will afford workers 

with disabilities a greater opportunity to 

succeed by incorporating the flexibility of 

telework into the ordinary employment policies 

and practices of the federal government.

■ If, because of experiences during the 

pandemic, more employers offer flexible 

hours, remote work, and telework into the 

future, this could greatly expand employment 

opportunities for workers with disabilities. 

Telework can allow individuals with 

disabilities to work even if they have barriers 

to commuting, such as not driving due to 

disability, or inaccessible public transportation. 

Increased availability of remote work 

could also improve job opportunity for the 

disproportionate number of people with 

disabilities who live in rural areas and who 

experience lower rates of unemployment.

■ Section 14(c) to the Fair Labor Standards Act 

creates a federally sanctioned segregated 

jobs system for people with disabilities and 

is contrary to the civil rights principles of the 

ADA and its integration mandate. The onset 

of the pandemic caused many sheltered 

workshops to close. These congregate 

workplaces posed substantial health risks to 

workers with intellectual and developmental 

disabilities, who are at increased risk of 

severe illness and death from COVID-19.

■ Many people with disabilities who worked in 

sheltered workshops under Section 14(c) of 

the Fair Labor Standards Act found that they 

were not eligible for unemployment when 

their work stopped due to the pandemic.

■ Many of these segregated programs 

have reopened or are slowly reopening. 

The ongoing recovery effort provides 

an opportunity for a substantial federal 

investment into developing integrated 

employment opportunities as alternatives to 

sheltered workshops.

■ Older workers with disabilities who have 

lost their jobs due to the pandemic face 

a high risk that they will never rejoin the 

workforce. Many of these workers have 

been or will be forced into early retirement, 

with the serious financial and other losses 

that accompany this change in status.

Recommendations

To ensure the United States is prepared for a 

future pandemic or similar national health crisis, 

NCD recommends the following actions based 

on our findings about the impact of COVID-19 

on workers with disabilities and working-aged 

people with disabilities:

164 National Council on Disability
Recommendations for Congress

Congress should:

■ Task GAO with examining the gaps in employment protections that occurred during the 

COVID-19 pandemic, including for people with disabilities who were vulnerable to severe 

outcomes from COVID-19, and for people who have COVID-19–vulnerable household 

members, or who are caregivers to COVID-19–vulnerable individuals. This examination 

should consider whether existing laws and federal policies will provide adequate 

protections to these workers during future pandemics, or whether new laws or federal 

policies are needed.

■ Pass legislation to decouple eligibility for Medicaid and Medicare from eligibility for cash 

benefits. The legislation should allow people with disabilities covered by Medicaid and/

or Medicare through the SSI and SSDI programs to work and to retain their existing 

healthcare coverage permanently, without cost to the individual and without any complex 

paperwork.

■ Pass legislation to allow people with disabilities receiving Social Security Administration 

benefits to work without fear of losing necessary income and supports, such as the Work 

Without Worry Act (S. 2108) which would allow adults with disabilities who receive the 

Disabled Adult Child benefit to work without jeopardizing their benefits. Congress should 

also raise the benefit amount for SSI to above the federal poverty line.

■ In the event of a future national disaster or public health emergency, pass legislation 

immediately to provide dedicated unemployment and relief funds to stabilize households, 

including those of part-time workers, self-employed individuals, and gig workers, who are 

disproportionately people with disabilities, working families with children with disabilities, 

individuals with caregiving obligations, and people with disabilities receiving SSI and SSDI 

benefits.

■ Enact the Transformation to Competitive Integrated Employment Act (TCIEA), which 

would phase out and repeal 14(c) from the Fair Labor Standards Act and would invest in 

alternative service models prioritizing competitive integrated employment.

■ Adequately fund vocational rehabilitation by increasing authorization for preemployment 

transition services, training programs, and integrated competitive employment, including 

supported employment, for individuals with disabilities.

■ Enhance tax credits for employers who hire and retain employees with disabilities by 

enacting the Disability Employment Incentive Act.

(continued)

The Impact of COVID-19 on People with Disabilities 165
■ Authorize and fund a federal exchange for state unemployment benefits, to be overseen 

by the U.S. Department of Labor, that is accessible to and usable by everyone eligible for 

unemployment benefits, including people with disabilities. Require states that are unable 

to provide an accessible and usable system for state unemployment benefits to join the 

federal exchange.

Recommendations for Congress: continued

Recommendations for Federal Agencies

EEOC should:

■ Work to strengthen legal protections for workers with disabilities who seek telework, 

leaves of absence, and safety policy modifications as reasonable accommodations. EEOC 

should offer guidance to employers in accommodating employees with needs that appear 

to conflict.

■ Consider amending Section 501 regulations to include a sub-goal for older people with 

disabilities, and/or to require reporting on older workers with disabilities.

EEOC and DOL should:

■ Prioritize enforcement of the Americans with Disabilities Act and Sections 501 and 503 

of the Rehabilitation Act to ensure that workers with disabilities receive reasonable 

accommodations needed to secure or maintain employment, including accommodations 

needed due to the pandemic.

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.

DOL and OPM should:

■ Issue joint guidance on effective telework tools and highlight the benefit of telework for 

many people with disabilities. The guidance should describe the need for accessibility in 

remote work platforms and allow agencies to use the platforms that are most accessible 

based on employee needs.

166 National Council on Disability
Federal Communications Commission (FCC) should:

■ Take affirmative steps now to ensure that high-speed broadband internet is available to and 

affordable for everyone. The FCC’s Lifeline program should be expanded to provide highspeed broadband internet to low-income households for $10.00 a month.

Department of Labor should:

■ Audit state systems of unemployment benefits, and issue notices of correction to agencies 

that failed to maintain functional and accessible systems for applying for and maintaining 

benefits during the COVID-19 crisis, so that such agencies will be better prepared for any 

similar public emergency. The Department should require states to join a federal exchange 

if they cannot offer eligible workers such a system.

Office of Federal Contract Compliance Programs (OFCCP) should:

■ Consider amending Section 503 regulations to include a sub-goal for older people with 

disabilities, and/or to require reporting on older workers with disabilities.

Recommendations for Federal Agencies: continued

Recommendations for States and State Agencies

Fair Employment Practices (FEP) Agencies should:

■ Review any gaps in state employment law protections that occurred during the COVID-19 

pandemic, including for people with disabilities who were vulnerable to severe outcomes 

from COVID-19, and for people who have COVID-19–vulnerable household members, or 

who are caregivers to COVID-19–vulnerable individuals. State FEP agencies should report 

on their findings to state legislatures.

The Impact of COVID-19 on People with Disabilities 167
168 National Council on Disability
Chapter 6: Effective Communication

Overview of Effective 

Communication Before and During 

the Pandemic

T he COVID-19 pandemic has uniquely 

impacted Deaf and Hard of Hearing 

communities, people who are blind, and 

people who cannot rely on speech to be heard 

and understood. Today, there are over 37.5 million 

people with difficulty hearing, and an additional 

5 million people who cannot rely on speech to 

communicate, in the 

United States.672 Prior to 

the pandemic, they faced 

communication barriers 

across healthcare, 

education, employment, 

and government 

contexts. The provision 

of disability-related 

accommodations 

and proper auxiliary 

aids and services 

by public entities, 

employers, and public 

accommodations—as 

required by the ADA,673 Section 504 of the 

Rehabilitation Act,674 and Section 1557 of the 

Affordable Care Act675—was inconsistent and 

often a barrier to equal access.

With the pandemic, disparities in effective 

communication deepened. Widespread mask 

use and social distancing protocol, as well 

as increased reliance on virtual forums of 

communication, among other pandemic-era 

policies, created new challenges for people 

with hearing, vision, speech, and/or intellectual 

or developmental disabilities to interact 

with their communities and equally access 

healthcare, education, and employment. These 

new communication 

barriers also hindered 

the dissemination of 

public health information 

critical to slowing the 

spread of COVID-19 

and exacerbated the 

difficulties that people 

with disabilities already 

faced in accessing 

essential services. 

When, as during the 

pandemic, written and 

oral communications 

related to the provision of 

medical care and public 

health precautions are of the utmost importance, 

it is critical that public entities, employers, and 

places of public accommodation ensure that their 

Widespread mask use and social 

distancing protocol, as well as 

increased reliance on virtual forums 

of communication, among other 

pandemic-era policies, created new 

challenges for people with hearing, 

vision, speech, and/or intellectual 

or developmental disabilities to 

interact with their communities 

and equally access health care, 

education, and employment

The Impact of COVID-19 on People with Disabilities 169
communications are fully accessible to people 

with disabilities.

Healthcare Setting

The failure to provide proper accommodations 

to people with communication disabilities in 

healthcare settings can have life-threatening 

consequences. During the COVID-19 pandemic, 

which disproportionately caused serious illness 

and death among people with disabilities,676 it 

was crucial for patients and family members 

with disabilities to have the auxiliary aids 

and services that they need to be able to 

effectively communicate in healthcare settings. 

The failure of a hospital, doctor’s office, or 

medical provider to provide accurate, real-time 

communication in accessible formats can lead 

to a misunderstanding of a patient’s symptoms, 

inappropriate diagnosis, and/or delayed or 

improper medical treatment.677 While the entire 

country feared contracting COVID-19, millions 

of people with disabilities experienced the 

additional anxiety of being unable to learn about, 

communicate, and express decisions regarding 

their medical circumstances.678

Face Masks and Physical Distancing

COVID-19 is transmitted is through exposure 

to respiratory fluids carrying infectious virus. 

Exposure occurs in three principal ways: 

(1) inhalation of very fine respiratory droplets and 

aerosol particles, (2) deposition of respiratory 

droplets and particles on exposed mucous 

membranes in the mouth, nose, or eye by direct 

splashes and sprays, and (3) touching mucous 

membranes with hands that have been soiled 

either directly by virus-containing respiratory 

fluids or indirectly by touching surfaces with 

virus on them. To prevent infection and spread 

of the virus, including those were disabled and 

those medically at risk, the CDC recommended 

maintaining a physical distance of at least six 

feet from other individuals, practicing hand 

hygiene and environmental cleaning, By April 3, 

2020, CDC recommended the universal use 

of face coverings.679 Following this guidance, 

healthcare entities, as well as many government 

entities, businesses, and employers, mandated 

the use of face masks. These measures have 

been a double-edged sword for disability 

communities. These requirements are important 

to protecting high-risk individuals from 

contracting COVID-19, such as people with lung 

disease, asthma, heart conditions, diabetes, 

kidney disease, or conditions that deem a person 

immunocompromised.680 At the same time, 

however, the common use of opaque masks 

created new challenges for people who are Deaf 

and others with disabilities that impact their 

hearing or speech.

People who are Deaf and Hard of Hearing 

have varying degrees of hearing loss and rely 

on a variety of auxiliary aids and services in 

the healthcare setting, such as sign language 

interpreters, assistive technologies, and/or 

amplification of sound. Everyone has different 

needs and preferences, but auditory cues and 

visual cues such as mouth and lip movements 

and facial expressions can play an important role 

in effective communication for many of these 

individuals.681

The use of face masks can muffle sound, 

making it more difficult for people with 

hearing loss to understand speech and higher 

pitched voices.682 It can also take away an 

individual’s ability to lip read and contextualize 

communications through the observation of facial 

expressions.683 People with hearing loss have 

170 National Council on Disability
reported “widespread difficulty” in understanding 

healthcare providers who are wearing face 

masks during the COVID-19 pandemic.684 For 

example, one participant in a recent study, 

who had significant but not complete hearing 

loss, reported that they “attended a clinic 

appointment . . . [and] struggle[d] to understand 

what was said [] by the consultant wearing 

[a] facemask.”685 Others report having to ask 

healthcare workers to repeat themselves and 

speak more loudly because of the barriers 

created by the face mask.686

Physical distancing can also create heightened 

communication challenges. Distance causes 

speech to sound quieter 

and makes it more 

difficult to see visual 

cues, especially when 

an individual also has 

vision loss.687 It can 

also be more difficult 

for individuals to focus 

their attention on a 

speaker from a distance, 

because other sounds 

and movements in the environment can distract 

or overshadow the communication.688 The change 

in nature of face-to-face interactions caused by 

the pandemic “hinder[ed] speech understanding” 

among people with hearing loss and/or 

intellectual or developmental disabilities.689

Several solutions were suggested to lessen 

the communication difficulties created by face 

mask use and social distancing in the healthcare 

setting. First, the use of adaptable, clear masks 

has been widely endorsed as an alternative that 

accommodates people who lip read.690 In one 

study, the sentiment that key healthcare workers 

should be supplied with a transparent face 

mask was “widely shared.”691 However, while 

some clear masks were approved by the FDA, 

they were not N95-rated and therefore were 

inappropriate in certain healthcare settings, such 

as when a provider is interacting with COVID-19 

patients.692 Additionally, they do not alleviate 

communication barriers created by muffled sound 

and certainly cannot be a substitute for an ASL 

interpreter, when that is the patient’s primary 

language.

Alternative accommodations must also 

be considered. Depending on the needs and 

preferences of the individual, the use of a sign 

language interpreter; assistive technology 

such as video-remote 

interpreting (VRI), 

transcription services, 

Communication Access 

Realtime Translation 

(CART), and assistive 

listening devices; lowtech solutions such 

as communication 

boards; or moving 

an appointment to 

an accessible telemedicine forum may be 

appropriate. While each of these accommodations 

have their own complications related to the 

COVID-19 pandemic (as further discussed 

in the following subsections), it is essential 

that healthcare providers and administrators 

continue to listen to the needs of people with 

communication disabilities and devise effective 

solutions to ensure that they can learn and 

communicate about their health conditions.

In addition to the challenges that face mask 

mandates create in the receipt of information 

from healthcare professionals, they also can 

create barriers for people with disabilities 

In addition to the challenges that 

face mask mandates create in the 

receipt of information from health 

care professionals, they also can 

create barriers for people with 

disabilities to provide information 

to their health care providers

The Impact of COVID-19 on People with Disabilities 171
to provide information to their healthcare 

providers. There are individuals who, by virtue of 

their disability, cannot wear a mask either at all 

or for an extended period of time.693 Examples 

include individuals with developmental or 

intellectual disabilities who cannot tolerate 

masks, people with mobility impairments 

who cannot independently put on or take off a 

mask, people who use ventilators to support 

breathing, people with seizure disorders who 

may be in danger if they experience a seizure 

while wearing a mask, people with lung 

diseases or breathing 

difficulties, and people 

who experience panic 

attacks while wearing 

masks.694

In-Person 

Interpretation

Prior to the COVID-19 

pandemic, in-person 

interpretation in the 

hospital setting was 

the highest standard 

of care for people who 

communicate through 

sign language. Healthcare experiences can be 

fast-paced and dynamic. Especially in emergency 

situations, there are often multiple healthcare 

providers (doctors, nurses, technicians, etc.) in 

a room at once, performing several tasks, and 

attempting to communicate multiple pieces of 

information, all while the patient is potentially 

in a supine or prone position and in pain. In 

such situations, it is critical that the auxiliary 

aids or services provided to an individual with a 

communication disability be built for this dynamic 

environment. Digital interpretation services, 

such as VRI, have limited effectiveness in crisis 

care situations and are inferior to an in-person 

interpreter, who can observe the whole scene 

and move around the room as needed to facilitate 

communication.

However, at the onset of the pandemic, 

sign language interpreters expressed concern 

for their lives and safety, given the increased 

chance of contracting COVID-19 in the hospital 

setting.695 Likewise, patients expressed concern 

that interpreters could spread COVID-19 to the 

people who use their services, other patients 

in the facility, and 

hospital staff. These 

safety concerns were 

amplified by nationwide 

shortages in PPE.696 The 

economic crisis caused 

by the pandemic also 

significantly reduced 

the number of sign 

language interpreters 

available to provide 

services to people 

with disabilities.697

Many interpreters lost 

their jobs as funding 

for interpreter services decreased and public 

and private health insurers failed to cover 

interpretation and disability accommodation 

services.698

In order to balance the competing need for 

in-person interpretation services in hospital 

settings with the safety concerns of potential 

COVID-19 exposure from the use of such a 

service, interpreters must have access to PPE. 

Just like any other individual who is working in a 

hospital, a sign language interpreter is essential 

staff. To protect all parties involved, while still 

To protect all parties involved, 

while still providing the in-person 

interpretation services that are 

necessary in many critical healthcare 

circumstances, interpreters need 

adequate safety gear. Likewise,

healthcare entities must be provided 

the resources they need ..., includi

funding to ensure the availability 

of qualified interpreters and other 

augmentative communication tools

172 National Council on Disability
providing the in-person interpretation services 

that are necessary in many critical healthcare 

circumstances, interpreters need adequate 

safety gear. Likewise, healthcare entities 

must be provided the resources they need to 

effectively communicate with patients or family 

members with a communication disability, 

including funding to ensure the availability of 

qualified interpreters and other augmentative 

communication tools.

Assistive Technology

As an alternative to in-person interpretation, 

healthcare entities increased reliance on assistive 

technologies such as VRI, transcription services, 

or Communication Access Realtime Translation 

(CART), and communication boards during the 

COVID-19 pandemic. These communication 

tools have the advantage of bypassing the 

need for another individual—a potential vector 

for COVID-19—to be in the room. However, as 

explained in the previous section, the use of remote 

interpretation and other auxiliary aids is not always 

appropriate, especially in critical care settings. In 

situations where an in-person interpreter is not 

required, however, they can provide an effective 

tool to facilitate effective communication—when 

used properly and when certain technological 

performance standards are met.

For example, VRI is a videoconferencing 

technology for accessing an offsite interpreter 

to provide real-time sign language or oral 

interpretation services for conversations 

between hearing people and the Deaf or Hard of 

Hearing.699 To be effective, VRI must be used over 

a dedicated high-speed, wide-bandwidth internet 

connection; the screen must be large enough 

to display the interpreter’s entire upper body; 

the audio must be clear; and facility staff must 

be trained in its set-up and proper operation.700

Provided that the situation does not require an 

in-person interpreter and the individual with 

hearing loss prefers VRI over an in-person 

interpreter, then properly used VRI can be an 

effective solution to communication in healthcare 

settings, while also reducing potential exposure 

to the COVID-19 virus.701

Alternatively, some people with hearing 

loss may prefer to use remote real-time 

transcription services like CART to communicate 

with their healthcare providers,702 or low-tech 

communication methods, such as supplemental 

communication boards.703

Telemedicine

In an effort to slow the spread of the COVID-19 

virus, healthcare entities have rapidly adopted 

telephone and video visits (collectively 

“telemedicine”) as an alternative to traditional inperson care. Prior to the pandemic, telemedicine 

was widely unavailable due to a preference for 

seeing patients in person and potential Health 

Insurance Portability and Accountability Act of 1996 

(HIPAA) concerns related to the perceived lack of 

security of telecommunications. Where available, if 

a person with a disability faced barriers accessing 

the platform or communicating with healthcare 

providers, then they could revert to in-person care. 

For this reason, some argue that the focus of 

communication access has concentrated almost 

exclusively on how to adapt the in-person healthcare 

environment to accommodate the needs of people 

with disabilities; while telemedicine, up until the 

pandemic, was largely an afterthought.704 COVID-19 

has swiftly changed that.

For some people with disabilities, particularly 

those who are immunocompromised and/or have 

mobility disabilities, telemedicine was a welcome 

The Impact of COVID-19 on People with Disabilities 173
addition to healthcare systems. It created a safer 

and more affordable method of receiving healthcare 

when physical presence is not necessary—reducing 

potential exposure to communicable diseases 

like COVID-19, lowering transportation costs and 

hardships, and lowering 

the cost of care.705 On 

the other hand, however, 

it has created a host of 

new communication 

barriers for people with 

hearing loss, vision loss, 

and/or intellectual or 

developmental disabilities.706

Most HIPAA-compliant telemedicine platforms 

do not have built-in accessibility features to 

facilitate communications with patients with 

disabilities.707 Features such as live captioning 

and three-way video visits (which allow an 

interpreter to join the 

meeting and facilitate 

communication) are not 

yet commonplace.708 This 

means that telemedicine 

visits can be useless 

to the Deaf or Hard 

of Hearing, who may 

be able to see but not 

communicate with their 

healthcare providers. 

While a telephone visit—

when coupled with a 

relay service operator 

such as Text Telephone 

(TTY)—may be a more 

viable option, quality of care is questionable 

when the only means of communication is 

through text, especially when visits are further 

constrained by time limits.

Likewise, telemedicine platforms and the 

patient education materials posted on them 

are often not accessible to people with vision 

loss.709 Websites, software programs, and 

electronic documents are often not designed 

and formatted to be 

accessible with a screen 

reader. Compliance 

with World Wide Web 

Consortium’s (W3C) Web 

Content Accessibility 

Guidelines (WCAG) is not 

widespread.710

To remedy the communication barriers in 

telemedicine, the digital interfaces must be 

customized to accommodate the needs of people 

with disabilities. This includes ensuring that threeway video visits are supported by the platform 

and the interface is visually accessible.

No-Visitor Policies

During the course of the 

COVID-19 pandemic, 

some hospitals have 

enacted no-visitor 

policies.711 These 

policies were aimed at 

decreasing the number 

of people in hospital 

settings, thus curbing 

the spread of COVID-19 

among patients and 

hospital staff alike. 

However, due to the 

inflexibility, lack of 

exemptions, and lack of forethought regarding 

these policies, they also had the unintended 

consequence of blocking people with disabilities 

from accessing the direct care workers/direct 

Most HIPAA-compliant telemedicine 

platforms do not have built-in 

accessibility features to facilitate 

communications with patients with 

disabilities

[D]ue to the inflexibility, lack of 

exemptions, ... regarding the

[no visitor] policies, they also had 

the unintended consequence of 

blocking people with disabilities 

from accessing the direct 

care workers/direct support 

professionals and family members 

they needed ... to effective

communicate ... to health ca

providers, ... and make inform

medical decisions

174 National Council on Disability
support professionals and family members 

they needed by their side in order to effectively 

communicate their symptoms and needs to 

healthcare providers, accurately understand 

information provided by those staff members, 

and make informed medical decisions.712

A person with a disability’s daily direct care 

workers and family members know the individual, 

their conditions, and their needs better than 

anyone else. Blocking a support person from 

accompanying an individual during a hospital 

visit can decrease the quality of their care and 

put their lives at risk. As an example, consider 

the experience of Cindy (name changed for 

privacy reasons) and her adult son, who has 

an intellectual disability that impacts his ability 

to perform self-care. In Fall 2020, Cindy’s son 

experienced a medical emergency and needed 

to be transported to the hospital. Cindy, as 

the support person for her son, accompanied 

him to the emergency room. Cindy has the 

greatest perspective on and knowledge of 

her son’s needs. She knows, for example, 

when he needs respiratory suction and how to 

properly administer it. She also knows how to 

communicate with her son better than anyone 

else. When she visited the hospital in Fall 2020, 

the staff members refused to allow her to be 

by her son’s side. Despite bringing supporting 

documentation with her to the emergency room 

and citing relevant laws and State policy, the 

hospital refused to let her attend to her son for 

an hour and a half. Cindy feared for her son’s life 

the entire time.

Situations like what Cindy and her son 

experienced are unacceptable. Many people with 

disabilities rely on direct care workers or family 

members in order to effectively communicate 

with their providers. Exceptions to no-visitor 

policies must be made when it is necessary to 

effectuate the communication rights of people 

with disabilities. HHS OCR agrees with this 

position.713 As discussed in detail in Chapter 1, 

HHS OCR asserted in a series of resolutions 

with healthcare entities that no-visitor policies 

that fail to make exemptions for support 

persons of people with disabilities violate the 

ADA, Section 504 of the Rehabilitation Act, and 

Section 1557 of the Affordable Care Act, and 

can result in a denial of effective communication 

within the meaning of those laws.714

While the law is clear, federal and state 

entities must remind hospitals and healthcare 

facilities of their obligations to provide reasonable 

accommodation and policy modifications when 

needed by people with disabilities, including 

providing exceptions to general “no-visitor” 

policies during the pandemic when a patient needs 

a support person for disability-related reasons 

such as effective communication. These reminders 

must be clear that effective communication needs 

are one of the disability-related reasons that a 

support person may be needed, and for which an 

exception must be granted.

Congregate Care Settings

The COVID-19 pandemic also impacted the 

communication methods of people with 

disabilities who are in CCFs. By virtue of the 

danger of the COVID-19 virus spreading quickly 

through CCFs, in-person communication with 

individuals outside of the facility was sharply 

curtailed. Outside of staff members, very few 

individuals were able to connect with residents. 

This includes close family members, whose 

physical presence could place their loved 

one and other residents at risk of contracting 

COVID-19.

The Impact of COVID-19 on People with Disabilities 175
As a replacement for in-person interaction, 

CCFs increasingly relied on technology to 

provide residents with social interaction and 

healthcare. Technologies such as smartphones 

and tablets, which allow for video conferencing 

and telemedicine, became commonplace. 

Such technologies also created opportunities 

for social workers and other providers to 

assist residents in touring potential housing, 

assessing site accessibility and safety, picking 

out furniture, and engaging in other activities 

that ease transitions out of the CCF.

With the increased use of communication 

technologies, however, also came new barriers 

for some people with disabilities. An individual 

may not have the capacity to communicate 

via video screen if, for 

example, screen use 

triggers migraines; 

instead they may need 

telephone or in-person 

communication. 

Likewise, the 

communication platform being used may not be 

accessible for people with hearing or vision loss, 

as was discussed in greater detail in the previous 

section.

As in the healthcare context, in order to 

improve communication in CCFs, accessibility 

in virtual communication technologies must 

be prioritized. WCAG 2.1 standards should be 

adopted, and individuals living in CCFs should be 

given the assistance they need in learning and 

using new communication technologies.

Education Setting

Students with disabilities, as well as their parents 

and educators, were intimately affected by the 

social distancing policies enacted during the 

COVID-19 pandemic. While constantly evolving, 

the K-12 education system has incorporated 

remote learning modalities in a way never 

envisioned prior to the pandemic.

Remote Learning

At the beginning of the COVID-19 pandemic, 

many K-12 schools shifted from an in-person 

model of learning to a fully remote education 

system. Many still remained remote in 2021. The 

rise of remote education was a double-edged 

sword for the communication needs of students 

with disabilities: It has benefitted some students, 

but it has severely disadvantaged others.

For some disabled students, the remote 

learning modality allowed them to interact with 

their teachers and fellow 

students in a manner 

not previously possible. 

For example, the use 

of video conferencing 

provided them with 

greater exposure to the 

world and connectivity with their classmates as 

they could, quite literally, see into each other’s 

homes. An act as simple as sharing one’s pets 

with each other over a video platform can provide 

a valuable social interaction to some students 

with disabilities who may not otherwise be able 

to experience such close interaction with other 

students. Learning from home can also benefit 

some disabled students who have attendants, 

because remote learning makes it easier for 

these individuals to go off-camera when they 

need to engage in personal care. This can 

reduce stigma associated with the presence 

of the attendant and decrease any generalized 

classroom disruption. Further, particularly 

As a replacement for in-person 

interaction, CCFs increasingly relied 

on technology to provide residents 

with social interaction and healthcare

176 National Council on Disability
for students with disabilities that affect their 

social and emotional functioning, the degree 

of separation created by the virtual learning 

environment can decrease their social anxiety 

and actually encourage greater communication in 

the classroom.715

For other students with disabilities, however, 

the COVID-19 pandemic had a devastating 

impact on classroom communications.716 For 

many students, remote learning cut off access 

to education attendants, physical therapists, 

occupational therapists, and speech therapists. 

Parents do not have the specialized training, or, 

often, the time, to fill these roles. Many disabled 

students no longer had access to Braille or tactile 

learning tools that they may have relied on in the 

physical classroom. These problems were only 

amplified by the lack of proper accessibility in 

remote learning platforms. Video platforms are 

not always compatible with assistive technology, 

and sign language is difficult through video. 

Technological inadequacies can severely hinder 

educational accommodations.

Because of these concerns, it is critical that 

schools and teachers using remote learning make 

assistive technologies and services available for 

students, including real-time captioning of video 

lectures, video interpreter services, and other 

assistive technologies that a student who is Deaf 

or Hard of Hearing may need.717 Teachers should 

also ensure that they are on video, with proper 

lighting and their faces clearly visible in the 

frame, to facilitate lip reading and perception of 

other visual cues. If a student has a disability that 

affects their concentration or they easily become 

overstimulated, then teachers should ensure that 

The Impact of COVID-19 on People with Disabilities 177
everyone except the speaker is on mute.718 The 

needs and preferences of each student with a 

disability will be different. What is most important 

is that the school, teacher, and parents are on 

the same page about the needs of the students 

and, if necessary, their IEP is updated to reflect 

any new communication needs in the remote 

learning environment.

Modified In-Person Instruction

When schools reopened, teachers and 

administrators modified the physical learning 

environment to account for safety precautions. 

In particular, the use of masks and physical 

distancing changed the nature of in-person 

instruction and affected students with hearing 

loss and other disabilities that cause them to rely 

on visual cues to effectively communicate.

Masks can muffle sound, hide lip 

movements, and hide 

facial expressions; 

while increased 

physical distance 

from the teacher 

decreases the volume 

of communications. 

These new challenges 

made in-person 

learning even more 

difficult for students 

with communication 

disabilities. Depending on the needs of the 

student, measures such as wearing clear 

masks, amplifying the teacher’s voice, and 

following communication best practices (such 

as directly facing a student while talking, 

speaking slower and louder, and providing extra 

written resources that bolster verbal instruction) 

are helpful.719 All students who are commonly 

expected to participate in classroom discussions 

should receive some basic instructions on 

how to effectively communicate with all their 

classmates in a modified in-person, hybrid 

learning context, or simulcast context. IEPs 

should also be updated, as needed.

Hybrid Learning Models

Some schools used a hybrid learning environment 

involving both in-person and remote instruction. 

This mixed approach can be confusing and 

anxiety-producing for students, especially for 

students with intellectual or developmental 

disabilities or with learning disabilities, who 

benefit from regular routines.

If a student is a part of a hybrid model, then it 

is important for the school and parents to foster 

as much consistency as possible. For example, 

if a student uses an ASL interpreter in person, 

then that interpreter 

should also be available 

to help with remote 

instruction as well.720 It 

is also important that 

the student have regular 

check-ins to determine 

whether the new way 

of learning is working 

for them and how it can 

be modified to better 

meet their needs. Like 

all learning models, IEPs should be modified as 

needed.

Government Activities

The most important aspect of slowing the 

spread of COVID-19 was to empower people 

with accurate information about the virus, its 

transmission, and vaccines.721 If facts about mask 

Masks can muffle sound, hide 

lip movements, and hide facial 

expressions; while increased 

physical distance from the 

teacher decreases the volume 

of communications. These new

challenges made in-person learning 

even more difficult for students with 

communication disabilities

178 National Council on Disability
use, physical distancing, and other protective 

practices were not available to everyone then we 

could not expect to slow the spread of the virus 

or decrease infection rates and the development 

of dangerous variants.722 Likewise, if accurate 

information about the efficacy and side effects 

of vaccines, or the availability of economic 

stimulus support related to COVID-19, was not 

made accessible to all individuals, then we could 

not expect equity in vaccination and economic 

support.

Traditionally, the role of disseminating 

public health information has been tasked to 

federal, state, and local governments. All federal 

programs and agencies, and all entities receiving 

federal financial assistance, are subject to 

disability rights laws that require information to 

be made available in alternative formats such 

as large print, electronic format, and Braille.723

Likewise, all federal websites and the content 

posted on them must be fully accessible.724 This 

includes all documents, videos, charts, graphs, or 

infographics that are made public.725

Despite clear legal requirements, people 

with disabilities were overlooked on multiple 

governmental levels during the COVID-19 

pandemic. Not only did state public health 

departments and local municipalities fail to make 

critical information accessible to people with 

communication disabilities,726 but so too did 

the federal government. For example, while the 

pandemic was still in its infancy—arguably at its 

most critical stage in relation to stopping or at 

least slowing the spread of the deadly COVID-19 

virus—the Trump administration’s White House 

consistently failed to provide sign language 

The Impact of COVID-19 on People with Disabilities 179
interpreters during its COVID-19 briefings.727 This 

left millions of U.S. residents who communicate 

using ASL, a language distinct from English,728

without access to critical, up-to-date information 

related to the pandemic.729 It took a lawsuit 

from the National Association of the Deaf in 

order to change this injustice. In September 

2020, six months into the known pandemic, a 

federal court ordered the White House to provide 

live ASL interpreters for all COVID-19–related 

briefings.730 The decision made clear: “With their 

lives at risk due to the pandemic, it is important 

to provide the information in ASL so that Deaf 

and Hard of Hearing people have access to this 

information.”731

Federal, state, and local governments must 

ensure that their programs and activities during 

the pandemic, and communications related to the 

pandemic, are fully accessible for people with 

disabilities. In the middle of this national crisis, 

it is essential that people with disabilities have 

access to the same information that any other 

individual does.732

All information shared by governmental 

entities must be accessible to people with 

disabilities, and this includes persons who may 

have limited English proficiency and require 

information in another language. Video briefings 

from the federal government must provide sign 

language interpretation and live captions, to 

ensure that individuals with hearing loss can 

have equal access. All written materials must be 

provided in formats accessible to people with 

visual impairments, including the availability 

of large print, Braille, and electronic copies of 

documents. All forms related to COVID-19 care 

180 National Council on Disability
and vaccination must be accessible and fillable. 

Additionally, all information disseminated on 

federal websites must be accessible for people 

with vision and/or hearing impairments. The 

failure to ensure accessibility in these contexts is 

not only a violation of the law but puts the lives of 

a population that is already particularly vulnerable 

to COVID-19 at even more risk.

Summary of Findings

■ The widespread use of opaque face masks 

served as a communication barrier to people 

with disabilities who rely on lip-reading and 

facial cues for effective communication.

■ There was a months-long nationwide 

shortage of PPE, and sign language 

interpreters in healthcare settings did not 

have sufficient access to it, hindering the 

safe use of their services.

■ Telemedicine platforms were initially 

inaccessible to people with communications 

disabilities, with many platforms not 

supporting three-way video visits with 

interpreters or screen-reader accessibility.

■ Hospital protocols, such as mask mandates 

and no-visitor policies, failed to account for 

the needs of people with communication 

disabilities at the onset of the pandemic.

■ Remote and hybrid learning modalities 

failed to provide proper communication 

accommodations to students with 

disabilities at the beginning of the 

pandemic, rendering the school environment 

inaccessible for many children with 

disabilities.

■ Local, state, and federal government entities 

did not disseminate information related to 

the COVID-19 pandemic, its transmission, 

and vaccines in fully accessible formats.

Recommendations

To ensure that the United States is prepared 

to support effective communication for people 

with disabilities as fully as possible in a future 

pandemic or similar national health crisis, NCD 

recommends the following actions based on our 

findings about the impact of COVID-19 on people 

with disabilities:

Recommendations for Congress

■ Congress should increase funding to healthcare entities and providers during public health 

emergencies specifically aimed at ensuring effective communication services and PPE for 

in-person interpreters.

The Impact of COVID-19 on People with Disabilities 181
Recommendations for Federal Agencies

■ HHS OCR and DOJ should direct hospitals and other healthcare entities to include in their 

nondiscrimination notices and staff training the recognition of policy modifications as part 

of a patient’s right to effective communication, in addition to the provision of auxiliary aids 

and services when needed by patients with disabilities to receive effective care. Concrete 

examples should be provided, such as giving exceptions to face mask mandates when 

an individual cannot wear a mask by reason of their disability and to general “no-visitor” 

policies when needed for disability-related communication needs.

■ HHS should release guidance outlining appropriate exemptions to face mask mandates 

and encouraging the use of adaptable face masks.

■ HHS OCR should enforce the WCAG 2.1 standards in the telemedicine.

■ ED should direct schools to assess and provide necessary reasonable accommodations 

and supports, including auxiliary aids and services such as captioning, sign language 

interpreting, and audio description, to students with disabilities during in-person, remote, 

and hybrid learning.

■ All federal entities involved in public health, emergency management, and the 

provision of public announcements or briefings of broad public importance:

Disseminate information related to any pandemic or public health emergency in accessible 

formats, including information about the nature of the emergency, mitigating actions that 

individuals should take, available federal and state assistance and support, and available 

medical treatments, This includes providing sign language interpretation and/or captions 

during live and pre-recorded video briefings; making all written materials available in 

alternative formats; and making all online materials accessible.

182 National Council on Disability
Recommendations for Other Entities

■ State Hospital Associations: Work with state departments of public health and 

disability advocacy groups to develop guidance and best practices for ensuring effective 

communication in hospitals and associated urgent care clinics during public emergencies, 

including:

● The provision of clear, adaptable masks to hospital staff, to be used when an N-95 mask 

is not required;

● The provision of qualified in-person interpretation when a person with a disability 

requests it, with PPE made readily available to interpreters;

● Fully accessible telemedicine platforms to ensure effective communication for people 

with communication disabilities, including ensuring that their interface supports threeway video visits with interpreters and that the platform and its content are screen-reader 

accessible, consistent with the WCAG 2.1 standards.

The Impact of COVID-19 on People with Disabilities 183
184 National Council on Disability
Chapter 7: Addressing the Impact of COVID-19 

on Mental Health and Suicide

Introduction

T he pandemic has had a tremendous 

adverse impact on the nation’s mental 

health. The economic impact of job losses 

resulting from the pandemic, the social isolation 

caused by remote work, 

closed businesses, 

stay-at-home orders, and 

physical distancing, the 

burnout experienced by 

healthcare workers, and 

the difficulty of obtaining 

needed accommodations 

in school and at work all 

contribute to increased 

rates of mental health 

disabilities, substance use disorders, and suicide. 

Rates of anxiety and depression have risen 

significantly, particularly for healthcare workers 

and other essential workers. Crisis hotlines have 

experienced high call volumes and surveys show 

rising rates of individuals contemplating suicide, 

particularly people of color, unpaid caregivers, and 

essential workers.

At the same time, the pandemic has created 

severe limitations on the availability of mental 

health services. Behavioral health services in 

public systems were already strained before 

COVID-19, and the pandemic has tremendously 

hampered service delivery due to the impact on 

provider staffing and the need to shift service 

delivery mechanisms and find new flexibilities. 

The pandemic has presented opportunities 

for service improvements, however, including 

changes to policies to facilitate telehealth 

services that may 

enable greater numbers 

of people to access 

services. Moreover, 

the pandemic presents 

opportunities to revisit 

our approach to suicide 

prevention, which 

is ineffective and 

focuses primarily on 

hospitalization, placing people at risk of COVID-19 

transmission.

The Pandemic Has Had a Dramatic 

Effect on the Nation’s Mental Health

The pandemic’s impact on the mental health 

of adults and children across the United States 

has been well documented. The social isolation 

caused by protective measures to combat 

COVID-19—including physical distancing, 

quarantining, and a dramatic reduction in social 

activities—has resulted in isolation, loneliness, 

and depression. Literature and studies showing 

The social isolation caused by 

protective measures to combat 

COVID-19—including physical 

distancing, quarantining, and 

a dramatic reduction in social 

activities—has resulted in isolation, 

loneliness, and depression

The Impact of COVID-19 on People with Disabilities 185
that these results of the pandemic have 

negatively affected the mental health of adults 

and children abound.733 Surveys consistently 

show high percentages of adults and children 

experiencing anxiety and depression as a result 

of this situation, as well as an increase in suicidal 

thoughts.734 Surveys conducted in June 2020 

found that symptoms of anxiety disorder and 

depression increased considerably in the United 

States during April through June compared with 

the same period in 2019, with anxiety symptoms 

three times as high and depression symptoms 

four times as high.735 About twice as many people 

reported serious consideration of suicide within 

the previous 30 days than 

did adults in the United 

States during 2018.736

These trends have 

continued throughout 

the pandemic. In January 

2021, CDC’s National 

Health Interview Survey 

and Census Bureau 

Household Pulse data 

showed that 41 percent 

of adults reported 

symptoms of anxiety and/or depressive disorder 

that month—a figure that had changed little since 

the spring of 2020—compared to 11 percent 

between January and June of 2019.737

The negative impact on mental health has not 

only amplified the impact of preexisting mental 

health disabilities but also resulted in individuals 

developing mental health disabilities that they 

did not have before the pandemic. Indeed, many 

people with psychiatric disabilities had already 

experienced loneliness and social isolation prior 

to the pandemic, and that isolation was further 

magnified as a result of the pandemic’s public 

health measures.738 For people with chronic 

illness, already high rates of concurrent mental 

health disabilities may have been heightened 

further because of their vulnerability to severe 

effects of COVID-19.739 Older adults are also 

at particular risk, as many “have experienced 

an acute, severe sense of social isolation and 

loneliness with potentially serious mental and 

physical health consequences.”740 Further, having 

COVID-19 itself may have led to mental health 

disabilities for some people; one study found 

that 18 percent of people with and without a 

past psychiatric diagnosis were later diagnosed 

with a mental health disability after having 

been diagnosed with 

COVID-19.741

The pandemic’s 

mental health impact 

has been felt with 

particular force in 

communities of color, 

which have experienced 

disproportionately high 

rates of COVID-19 cases 

and deaths. Black and 

Latinx adults have more 

commonly reported symptoms of anxiety and/

or depressive disorder during the pandemic than 

White adults. Further, Black and Latinx adults 

were less likely to receive needed mental health 

services than others prior to the pandemic.742

In addition, the impact of the pandemic on 

veterans’ mental health is significant. Veterans 

already face isolation and a sense of social 

disconnectedness due to the challenges of 

explaining past traumatic experiences to those 

who have not served in the military. Ordinarily, 

between 17 and 18 veterans die by suicide 

each day in the United States.743 According 

In January 2021, CDC’s ... da

showed that 41 percent of adults 

reported symptoms of anxiety 

and/or depressive disorder 

that month—a figure that had 

changed little since the spring of 

2020—compared to 11 percent 

between January and June of 2019

186 National Council on Disability
to the Wounded Warriors Project, a national 

veteran services organization, “lack of social 

connection (loneliness) along with co-occurring 

mental health conditions (PTSD, depression, 

suicidal ideation) exacerbates and magnifies 

the burden warriors experience during adverse 

events like COVID-19.”744 The Project reported 

that at the time of its 2020 survey, “60% of 

warriors were experiencing moderate to severe 

depression symptoms, 56% were experiencing 

PTSD symptoms, 66% reported loneliness, 

and 30% reported recent suicidal ideations.”745

The mental health impact on children from 

prolonged periods of time outside of school, 

without physical interaction with peers, remains 

to be seen; but grave concerns have been raised 

about the impact of this situation in the short 

and long term. As one stakeholder convening 

participant observed, “this pandemic is a perfect 

storm of those suicide risk factors, including 

social stressors, . . . loss, adverse life events, life 

transition, physical illness, feeling trapped and 

isolated,” and COVID-19 increases the presence as 

well as the severity of all of these risk factors.746

Mental Health Impact on 

Healthcare Workers and Other 

Essential Workers

Frontline healthcare workers and other essential 

workers have been particularly impacted by the 

pandemic. Essential workers had the highest 

rates of adverse mental health outcomes 

compared to all other employment groups 

surveyed by CDC.747 Research has shown that 

frontline healthcare workers are generally at 

higher risk of negative mental health outcomes 

The Impact of COVID-19 on People with Disabilities 187
during pandemics.748 During the COVID-19 

pandemic, caregivers working in LTCFs and those 

providing unpaid care to family members or other 

loved ones have faced particular mental health 

risks due to the stressors of high coronavirus 

infection risks and burnout.749 Staffing challenges 

due to COVID-related illness, exposure, or 

childcare or other family responsibilities during 

the pandemic have also exacerbated stresses on 

healthcare workers.

Approximately one third of U.S. adults 

reported being essential workers required to 

work outside their homes during the pandemic.750

These workers are disproportionately Black and 

low-income.751 Women of color are particularly 

overrepresented.752 More than 90 percent 

of workers in the 

bottom 25th income 

percentile cannot work 

from home.753 In the 

healthcare industry, 

more than 6.5 million 

healthcare support 

workers earn less than the U.S. median wage, 

and many do not receive basic benefits such as 

paid sick leave or personal leave.754

A significant proportion (30 percent) of adult 

workers reported symptoms of anxiety or 

depression in a June 2020 survey, but essential 

workers reported such symptoms at even higher 

rates (42 percent). Twenty-two percent of essential 

workers also reported suicidal thoughts, compared 

with 8 percent of nonessential workers.755 Nearly 

three in ten essential workers said that their 

mental health has worsened, and 75 percent said 

they could have used more emotional support 

than they received.756 Thirty-one percent of unpaid 

caregivers for adults “seriously considered 

suicide” during the past 30 days.757 Moreover, 

multiple studies have found that frontline 

healthcare workers with preexisting mental health 

conditions “were more likely to exhibit severe 

mental health outcomes during outbreaks.”758

This level of distress suggests that many of 

these workers experience psychiatric disabilities, 

whether or not they had such disabilities before 

the pandemic. Indeed, 25 percent of essential 

workers reported being diagnosed with a mental 

health disorder since the start of the pandemic.759

Essential workers were more than twice as likely 

as those who are not to have received treatment 

from a mental health professional (34 percent 

vs. 12 percent) and to have been diagnosed with 

a mental health disorder since the coronavirus 

pandemic started (25 percent vs. 9 percent).760

The mental health 

impact on healthcare 

workers in particular 

has manifested itself 

not only in the anxiety, 

depression, and 

loneliness that many 

have experienced during the pandemic, but also 

in trauma-related disorders. Frontline healthcare 

workers have experienced sickness and death 

on a daily basis during the pandemic, and have 

repeatedly been placed at risk for infection, often 

without adequate staffing and resources.761

Thirty-five percent of healthcare workers have 

experienced trauma-related symptoms.762 These 

symptoms were particularly common in women, 

nurses, frontline workers, and workers who 

experienced physical symptoms of COVID-19.763

Recommendations to address these issues 

have included both clinical approaches, such 

as expanding the mental health workforce to 

expand the availability of services, and nonclinical 

approaches including making available peer 

... 25 percent of essential worke

reported being diagnosed with a 

mental health disorder since the 

start of the pandemic

188 National Council on Disability
support services (provided by individuals with 

lived experience with psychiatric disability to help 

individuals develop skills in managing illness and 

recovery, in self-advocacy, and in identifying and 

using natural supports) and workplace supports 

such as employee assistance programs.764 Peer 

support is a highly effective intervention that has 

been used for many decades and recognized 

by the CMS as an evidence-based service.765

It has also been a widely used and successful 

intervention for veterans with mental health 

disabilities including PTSD.766

Other recommendations have included 

employers providing flexibility and support to 

essential workers, including making reasonable 

accommodations, removing nonessential tasks, 

ensuring essential 

workers have access 

to PPE and to needed 

transportation, 

recognizing the 

phenomenon of burnout, 

and helping employees 

prioritize critical tasks.767 Diversifying the mental 

health workforce has also been recommended, 

given the disproportionate representation of Black 

Americans and other people of color among the 

essential workers impacted by the pandemic.768

Mental Health Impact Resulting from 

Remote Work and from Increased Job 

Loss and Unemployment

The isolation and stress of remote work also seem 

to have had a significant impact on individuals’ 

mental health. The closure of many schools, 

daycares, and public spaces has meant that many 

people who have been able to work from home 

during the pandemic are facing new stresses, 

additional responsibilities at home, and diminished 

work-life balance.769 Surveys found that nearly half 

of adults working from home during the pandemic 

experienced stress, anxiety, or depression; for 

many, these experiences began or worsened after 

they started working from home.770

Further, the increased job loss and 

unemployment associated with the COVID-19 

pandemic has contributed to the development of 

mental health and substance use disabilities.771

During April 2020, the U.S. unemployment rate 

peaked at 14.8 percent, the highest since data 

collection began in 1948.772 Unemployment rates 

have been higher for workers without a college 

degree and for racial and ethnic minorities during 

the pandemic.773 People of color have historically 

experienced higher unemployment rates than 

white people in the United 

States, but the disparities 

in unemployment rates 

spiked during April 2020 

and unemployment 

rates for people of 

color remained high 

through the end of 2020, even though the overall 

unemployment rate fell.774 Estimates of how many 

Americans lost employment due to the pandemic 

range from 13 million to 36 million, depending on 

the methodology used.775

Half or more of those who became 

unemployed during the COVID-19 pandemic 

have developed behavioral health conditions.776

Research has consistently found that rises 

in unemployment are directly associated 

with increases in suicide.777 The Meadows 

Mental Health Policy Institute estimated that a 

COVID recession on par with the 2007–2009 

recession, which brought a 5 percent increase 

in unemployment, would result in the loss of 

approximately 4,000 additional Americans to 

Half or more of those who became 

unemployed during the COVID-19 

pandemic have developed 

behavioral health conditions

The Impact of COVID-19 on People with Disabilities 189
suicide.778 Individuals who are most at risk of 

having adverse mental health impacts are those 

for whom unemployment is an immediate threat 

to their survival.779

Moreover, during and after a major recession, 

individuals who have developed behavioral 

health conditions have an especially difficult time 

becoming re-employed.780 In addition, research has 

shown that people with behavioral health conditions 

are disproportionately likely to contract COVID-19 

and die from it. Thus, as one set of prominent 

mental health experts observed, “COVID-10 

infection and behavioral health conditions influence 

each other in a bidirectional relationship.”781

It is no surprise that the job loss and 

unemployment caused by the pandemic have 

had such a significant adverse effect on mental 

health. Not only is unemployment associated with 

negative mental health effects, but conversely, 

work is associated with improved mental health 

outcomes. Work is not only a means to economic 

security: “[E]mployment is itself an effective 

behavioral health intervention” and “part of the 

[mental health] recovery process itself.”782

Accordingly, one key measure that has been 

recommended as a strategy to address the 

mental health effects of the pandemic is making 

evidence-based supported employment services 

available to individuals who have developed 

behavioral health conditions as a result of the 

pandemic. The experts recommending this 

strategy pointed out that the rate at which 

the Individual Placement and Support model 

of supported employment for people with 

psychiatric disabilities succeeded in getting 

people competitively employed during the fourth 

quarter of 2020, when the pandemic was at its 

height, was 42 percent—just as high as it has 

averaged over the past decade.783

The success of these services even during 

the pandemic reflects that individual placement 

and support (IPS) teams continued to provide 

services remotely throughout the pandemic and 

developed expertise in providing all phases of 

supported employment with minimal face-to-face 

contact.784 Since the behavioral health disabilities 

developed by individuals unemployed due to the 

pandemic are less severe than those experienced 

by individuals who have traditionally received IPS, 

these unemployed individuals may be helped with 

lower levels of service than IPS usually requires.785

Mental Health Impact on Children 

and Youth

The pandemic has particularly affected the 

mental health of children and youth due to the 

isolation, stresses, and difficulties associated 

with remote learning. A November 2020 report 

from CDC showed a dramatic increase in mental 

health emergencies among children and youth.786

Beginning in March 2020 and continuing through 

the end of the reporting period in October 2020, 

the proportion of mental health–related emergency 

department visits increased sharply, with increases 

of 24 percent among children aged 5–11 years 

and 31 percent among adolescents aged 12–17 

years compared with the same period in 2019.787

While CDC cautions that this data has limitations, 

including that the percentage of children’s mental 

health emergency department visits may appear 

proportionally inflated due to the sharp declines in 

emergency department use for other issues such 

as asthma and musculoskeletal injuries in 2020, it 

is still troubling.788 Most emergency departments 

do not have adequate capacity to treat pediatric 

mental health concerns.789

In addition to the loneliness and social isolation 

experienced by children and youth who spent 

190 National Council on Disability
months isolated from their peers and school 

communities, one cause of increased mental 

health concerns may be the reduced access to the 

mental health services that many children receive 

through their school or in their communities, 

leading to increased reliance on emergency 

department services for routine treatment as well 

as crisis services.790 Between March and May 

2020, children on Medicaid received 44 percent 

fewer outpatient mental health services, such as 

therapy and in-home support, compared to the 

same time period in 2019.791

Additionally, with many children having been 

away from school and disconnected from adults 

who might ordinarily identify signs of abuse or 

neglect, the potential for children to be exposed 

to trauma as abuse or neglect goes unaddressed 

is high.793 Such adverse childhood experiences 

are strongly correlated with the development of 

mental health disabilities.794

A survey of college students conducted by 

Active Minds, a mental health organization with 

chapters on hundreds of college campuses, 

found that 80 percent of college students 

reported that COVID-19 has negatively affected 

their mental health, and one in five reported that 

their mental health has significantly worsened 

during the pandemic.795 Another survey found 

that college students’ mental health needs had 

changed during the pandemic, and many did not 

feel supported by their schools.796

Barriers to conducting mental health 

counseling and other services through telehealth 

have generally been removed, although some 

challenges may impede the effectiveness of 

telehealth to deliver these services, including the 

availability of adequate technology and the ability 

to ensure that students and staff can use that 

technology.797 For example, the above-referenced 

44 percent decrease in outpatient mental health 

services for children on Medicaid between March 

and May 2020 occurred despite the increased 

use of telehealth services.798 In addition, for 

some students, telehealth visits simply may 

not substitute for in-person interactions, and 

academic-focused mental health services may 

be more challenging to deliver through telehealth 

technology.

At the same time, the use of telehealth 

actually presented an opportunity to expand 

availability of mental health services to a greater 

Story of Student Mental Health Crisis

Crisis services were impacted. One story 

of a 17-year-old girl with autism who 

experienced mental health crises when her 

school closed is particularly poignant. The 

girl continued to get up early and wait for 

the school bus and began wandering when 

the bus did not show up. Her mother began 

calling a mental health crisis line and was 

routinely put on hold for 40 or 50 minutes. 

Out of frustration, the mother called the 

police for help. When the police showed up 

the girl became agitated and hit her mother 

in the back, leading police to arrest her and 

take her to jail. The mother pleaded with the 

police instead to drive the girl home so that 

she could take her medication, but the police 

indicated that they were unable to do that 

and the only places they could transport her 

were the jail or the hospital. The girl spent 

most of the night in jail until her mother 

posted bail.792

The Impact of COVID-19 on People with Disabilities 191
number of children and youth who could benefit 

from them, given the reductions in time needed 

for providers or clients to travel to in-person 

appointments. Hybrid in-person and virtual 

approaches, where providers serve some 

children through virtual appointments and others 

in person, could be an important part of that 

expansion and may help reach children who need 

additional support or do not have regular access 

to the internet.799

The Pandemic Has Limited Access 

to Mental Health Services at a Time 

When They Are Most Needed

While the COVID-19 pandemic created greater 

need for mental health services, at the same 

time it has significantly impaired the availability of 

mental health services. The National Governors 

Association reported that capacity and operations 

of the behavioral health system are increasingly 

strained due to the negative impact of illness 

and job loss on the direct care workforce.800

Most behavioral health community service 

providers suspended site-based services early in 

the pandemic. Providers struggled with staffing 

challenges, including for assertive community 

treatment (ACT), in-home services, and other 

services.801 Some agencies enhanced rates and 

other incentives to maintain staffing. Ensuring 

access to PPE was also a challenge.802

As noted above, state and federal rules 

restricting billing for behavioral health telehealth 

services were largely lifted during the pandemic. 

Nonetheless, use of telehealth by behavioral 

health providers remained limited due to lack 

of staff training, internet connectivity issues, 

and insufficient funds for technology, as well 

as concerns about clinical efficacy and privacy 

concerns.803 In addition, some services require 

face to face interaction.804

Federal and state efforts to address these 

issues made some difference, though more 

remains to be done, particularly in light of the 

challenges that mental health service systems 

faced even before the pandemic. Some of the 

strategies that were used include:

Strategies to Address the Need for Mental Health Services

■ Utilizing Medicaid flexibilities permitted due to the public health emergency.805 Florida, 

for example, waived prior authorization and limits on the frequency and duration of 

behavioral health services. North Carolina waived prior authorizations, limits on length of 

services, certain staff training requirements, supervision requirements, and face-to-face 

requirements for certain behavioral health services.806 Connecticut used an Appendix K 

waiver (these are discussed in the CCF chapter) to increase staff providing services for 

individuals with psychiatric disabilities coming out of nursing facilities.807 By November 17, 

2020, 36 states temporarily increased provider payment rates and 39 were temporarily 

using retainer payments to address emergency issues through Appendix K.808

■ Using Medicaid State Plan Amendments or other administrative actions to increase 

reimbursement rates for providers more permanently.809

192 National Council on Disability
■ Taking advantage of CMS guidance allowing states to request authority for advance 

payments to providers. States and Medicaid managed care organizations used prospective 

payments and advanced cash flow to help providers during the pandemic. New Hampshire, 

for example, asked its managed care plans to reallocate 1.5 percent of the capitation 

dollars for provider rate enhancements for certain providers, and Washington has worked 

with its managed care organizations to direct advance payments, capitated contracts, and 

other funding strategies toward providers at the highest risk of closing.810

■ Using state resources and providing guidance and training to support community-based 

provider needs related to the pandemic. For example, Washington paid for Zoom licenses 

for providers to ensure access to telehealth services.811

■ Taking advantage of new federal resources available through the COVID-19 relief 

legislation. These resources include a 10 percent increase in federal Medicaid 

reimbursement for HCBS, including a wide array of community mental health services, 

available through the American Rescue Plan (available for one year beginning April 1, 2021), 

an 85 percent federal match rate for mobile crisis services available through the American 

Rescue Plan (available for three years beginning April 1, 2022), new funding for Certified 

Community Behavioral Health Clinics available through the American Rescue Plan and prior 

COVID-19 relief legislation, and increased mental health and substance use disorder block 

grant funding through the various COVID relief packages.812

Strategies to Address the Need for Mental Health Services: continued

As the National Governors Association 

observed, additional support for technical 

assistance, training, and general capacity building 

by community behavioral health providers 

is needed given that these providers were 

already under-resourced for years prior to the 

pandemic.813

More Effective Suicide Prevention 

Strategies are Needed

As noted above, during the pandemic, the United 

States has seen significant increases in the 

percentage of individuals considering suicide. 

Participants in an NCD stakeholder convening 

concerning the pandemic’s impact on mental 

health and suicide universally identified problems 

with the way that suicide has been understood 

and the strategies being discussed to address 

and prevent suicide during the pandemic.

Participants noted that it was unsurprising 

that the pandemic had caused an increase in 

suicides, given all of the associated losses that 

it has caused, including loss of friends, family 

members and others, adverse life events, 

loss of jobs and housing, physical illness, a 

sense of feeling trapped and isolated, and life 

transitions.814 One participant mentioned that 

the first suicide that her organization saw during 

The Impact of COVID-19 on People with Disabilities 193
the pandemic was that of a transgender woman 

stuck in a hotel who took her life within hours 

after unsuccessfully asking someone for help 

with housing. That participant described how 

both the COVID-19 pandemic and the individuals’ 

past experiences with coercive mental health 

treatment led to a sense of loss of power and 

control that, consistent with research findings, 

increases the likelihood of suicidal thoughts.815

One survey found that for individuals who had 

been involuntarily confined in a psychiatric 

facility in the past or subjected to coercive 

mental health services, more than twice as 

many reported increased suicidal thoughts 

during the pandemic 

compared to individuals 

who had not been 

involuntarily hospitalized 

or subjected to force.816

Participants observed 

that suicide should 

not be understood 

as a “mental health 

problem,” and suicides 

during the pandemic 

have not been limited 

to individuals with preexisting mental health 

disabilities or individuals with newly developed 

mental health disabilities. They highlighted 

that efforts to focus on suicide itself as the 

problem to be stopped miss the root causes of 

suicide—the underlying stressors and problems 

that individuals who attempt suicide are trying 

to “solve” or escape.817 Rather than focusing 

on clinical approaches that target suicide itself, 

participants urged a public health approach that 

focuses on the systemic needs and inequalities 

that cause people to be in distress—for 

example, measures that focus on ensuring 

a living wage and measures that focus on 

preventing evictions.818

Participants pointed out that the common 

strategies discussed for addressing suicide 

during the pandemic are problematic or 

ineffective and that suicide prevention efforts 

should focus on alternative strategies. First, 

a great deal of attention has been given to 

screening and identifying individuals who 

may be suicidal, including particularly through 

the use of crisis or suicide hotlines.819 For 

example, the recommendation to call suicide 

or crisis hotlines features prominently in 

documents published by CDC, the National 

Institute of Mental 

Health, and the National 

Governors Association 

concerning strategies 

to address the mental 

health impact of the 

pandemic.820 Due to the 

passage of legislation 

designating a national 

“988” crisis line that 

will use the National 

Suicide Prevention Line 

for calls relating to both suicide and mental 

health crises generally, 988 has featured 

prominently in discussions of how to address 

mental health crises as we emerge from the 

pandemic.821

Convening participants noted, however, that 

little attention has been paid to what happens 

when individuals call these hotlines.822 Many 

individuals have come to avoid using these 

hotlines for assistance because of concerns 

about the requirement that hotlines contact 

law enforcement in certain circumstances and 

calls that have led to the frequent outcome of 

Many individuals have come to 

avoid using these hotlines for 

assistance because of concerns 

about the requirement that hotlines 

contact law enforcement in certain 

circumstances and calls that have 

led to the frequent outcome of 

involuntary hospitalization

194 National Council on Disability
involuntary hospitalization.823 A recent article 

chronicling the experiences of individuals who 

experienced unwanted police encounters and 

involuntary hospitalization as a result of calls to 

the National Suicide Prevention Line observed:

Driving much of this is growing awareness 

that calling 911 for issues of emotional 

distress can lead to deadly police 

interventions. Yet under-reported and 

under-investigated is the fact that calls to 

the National Suicide Prevention Lifeline 

(NSPL)—which prominently advertises 

itself as “confidential”—are often covertly 

traced. Callers get subjected to police 

interventions and forced psychiatric 

hospitalizations. Police shootings occur. 

Many callers describe their experiences 

as terrifying and traumatizing and say 

the betrayal has made them feel more 

isolated than ever.824

Among the examples described in the 

article are:

■ A veteran who called the NSPL during 

his lunch break at work when he was 

“feeling pretty down” but not actively 

suicidal. The man hung up after 10 

minutes to return to work, and 20 

minutes later police arrived, took his 

access badge, and escorted him to 

an ambulance that brought him to a 

veterans’ hospital. The man relayed that 

it was embarrassing and traumatizing 

because “[a]ll my coworkers and my 

The Impact of COVID-19 on People with Disabilities 195
lead and supervisor, they saw me get 

taken away.” The man, who is Black, was 

particularly intimidated by the police 

encounter because growing up he was 

frequently subjected to random stop-andfrisks by police. He was detained in the 

hospital until a family member came to 

pick him up several hours later. He was 

required to get clearance from a doctor in 

order to return to work, and subsequently 

received an ambulance bill for $1,000. He 

wonders whether the incident played a 

role in his being laid off several months 

later while individuals with less seniority 

were kept on.

■ A student who called the NSPL because 

she had no health insurance, could not 

afford therapy, and “was just depressed 

and kind of wishing that I might just die” 

and “wanted to talk to another person and 

maybe be reassured a little.” When the call 

attendant urged her to go to a psychiatric 

hospital immediately and the student 

explained she had a class that was about to 

start, the call attendant threatened to send 

police and the student hung up. Fifteen 

minutes later, the police and an ambulance 

showed up, strapped the student to a 

stretcher, and took her to a hospital where 

she was forced to strip and sit in an empty 

room for 12 hours without explanation. 

When her 72-hour involuntary detention 

period expired, the student consented to a 

voluntary admission out of fear that going 

through a court proceeding for involuntary 

commitment could threaten her ability to 

obtain a law license. The student received 

a $50,000 hospital bill at the end of her 

two-week stay.825

According to the NSPL, its call centers 

dispatch emergency services in only 2 percent 

of calls. But if its projection of up to 40 

million annual 988 calls by 2027 is accurate, 

a 2 percent rate of dispatching police and 

ambulances could affect up to 800,000 callers 

each year.826 Thus, while crisis or suicide 

hotlines may help many people, they may 

create other problems including expanding 

law enforcement involvement with people 

with psychiatric disabilities.

Moreover, suicide hotlines rely on 

screening tools that research has consistently 

demonstrated have little effectiveness in 

predicting suicide. The lead author of a widely 

read meta-analysis of the past 50 years of 

research on assessing suicide risk stated:

Our analyses showed that science could 

only predict future suicidal thoughts 

and behaviors about as well as random 

guessing. In other words, a suicide expert 

who conducted an in-depth assessment of 

risk factors would predict a patient’s future 

suicidal thoughts and behaviors with the 

same degree of accuracy as someone with 

no knowledge of the patient who predicted 

based on a coin flip. This was extremely 

humbling—after decades of research, 

science had produced no meaningful 

advances in suicide prediction.827

Convening participants noted that little has 

changed in the interventions that we offer 

once someone has been identified as at risk of 

suicide; the primary intervention continues to be 

hospitalization, despite research demonstrating 

that hospitalization does not result in lower rates 

of suicide and despite the dangers to which 

196 National Council on Disability
institutionalized people are exposed during the 

COVID-19 pandemic.828

Participants urged a demedicalized 

approach to suicide prevention that 

addresses the root causes of suicidality such 

as loss of jobs and housing, the need for 

culturally competent services to understand 

the different expressions of suicidality 

across cultures, expanded public and private 

coverage of suicidality treatments that 

focus on the underlying problems that are 

causing distress, including Collaborative 

Assessment and Management of Suicidality 

and Dialectical Behavioral Therapy for 

suicidality, and efforts to remove lethal 

means from individuals’ environments.829

They also urged the expansion of peer-run 

peer support services and approaches such 

as the “Alternatives to Suicide” groups 

conducted by the Western Massachusetts 

Recovery Learning Community, which are 

run by suicide attempt survivors and prohibit 

calls to law enforcement.830

Participants noted the challenges in 

expanding peer support, including extremely 

low wages in many areas, the general limitation 

of private insurance coverage to services 

provided by licensed professionals, and the 

strictures of Medicaid reimbursement for 

peer support services, which requires peer 

support workers to be supervised by clinical 

professionals. Participants also discussed 

the challenges of clinician involvement 

because clinicians may face potential liability 

connected with licensure obligations if they 

do not warn others or act if a person may be 

at risk of suicide.831 These concerns make it 

difficult for many individuals to speak freely to 

professionals about their distress, limiting the 

effectiveness of treatment. One participant 

referenced a survey concerning “Alternatives 

to Suicide” groups in which over 90 percent 

of respondents indicated that the most useful 

thing about these groups is being able to talk 

openly to someone without the prospect of 

being subjected to force.832

Many of these recommendations have 

been echoed by the American Foundation for 

Suicide Prevention. Its chief medical officer 

has developed priorities for addressing suicide 

that include involving individuals with lived 

experience (including COVID-19-related lived 

experience) in decision-making related to policy, 

clinical practice, and research; expanding the 

use of peer specialists and peer educators; 

expanding access to evidence-based suicide 

risk-reducing treatments such as Cognitive 

Behavioral Therapy, Dialectical Behavioral 

Therapy, and Collaborative Assessment and 

Management of Suicidality; and reducing 

access to lethal means.833

Summary of Findings

The COVID-19 pandemic had a devastating 

impact on the mental health of Americans. Due 

to the social isolation caused by remote work, 

job loss, closed schools, stay-at-home orders, 

shuttered businesses, and physical distancing, 

many adults and children experienced new 

mental health disabilities or exacerbations of 

existing ones. The adverse mental health effects 

of the pandemic hit certain groups particularly 

hard, including frontline and other essential 

workers, children and youth, veterans, and 

those who lost jobs. Women and people of 

color also experienced high rates of mental 

health disabilities due to their disproportionate 

representation among essential workers. Rates 

The Impact of COVID-19 on People with Disabilities 197
of anxiety and depression rose significantly, 

crisis hotlines saw high call volumes, and more 

people experienced suicidal thoughts.

At the same time that the pandemic caused 

increased mental health needs, it hamstrung 

the ability of mental health service systems 

to address those needs. Service providers 

experienced staffing shortages due to illness, 

exposure, and family or childcare responsibilities 

during the pandemic. Providers dramatically 

expanded their use of telehealth, but not 

everyone could access the technology needed 

for telehealth and not every service could be 

delivered remotely.

Expanded access to mental health services 

in public and private insurance is important to 

address the lasting impact of the pandemic 

even as it recedes. Peer support services and 

supported employment are particularly critical. 

Policymakers should also take this opportunity 

to rethink suicide prevention strategies and 

expand approaches that focus on the root 

causes of suicide such as job loss and housing 

unaffordability, as well as expanding insurance 

coverage of clinical strategies that address these 

root causes rather than relying so heavily on 

hospitalization.

Recommendations

To address the dramatic impact of the pandemic 

on the mental health of adults and children in the 

United States, expanding access to mental health 

services is urgent. The services needed include 

clinical services but also nonclinical approaches, 

including expansion of peer support services, 

services and accommodations that support 

individuals with mental health disabilities in the 

workplace, and housing supports.

Recommendations for Congress

Congress should:

■ Permanently authorize telehealth flexibilities that enable tele-mental health services while 

also ensuring that in-person services and hybrid in-person and virtual services are available 

options for those who need and want them. (This recommendation also applies to state 

lawmakers, as well as to private insurance regulators).834

■ Promote effective suicide prevention efforts. Rather than promoting screening and 

identification of individuals who may be suicidal and involuntarily hospitalizing them, 

Congress should promote suicide prevention efforts focusing on approaches that address 

the underlying problems that cause people to consider suicide. These should include 

helping individuals secure housing, preventing evictions, and helping individuals secure and 

maintain employment. They should also include peer-run support services for individuals 

who are experiencing suicidal thoughts. (This recommendation also applies to state 

lawmakers, as well as to private insurance regulators).

198 National Council on Disability
Recommendations for Federal Agencies

■ SAMHSA and state mental health agencies should robustly promote effective suicide 

prevention efforts focusing on approaches that address the underlying problems that 

cause people to consider suicide. These should include helping individuals connect with 

housing services and referring individuals to vocational rehabilitation or other employment 

programs for people with disabilities.

■ CMS should:

● Revisit Medicaid rules requiring that peer support services be delivered under the 

supervision of clinicians. While clinical input and consultation may be beneficial, it should 

not be a requirement for reimbursement of all peer support services.

Recommendations for States

States should:

■ Take steps to expand the mental health workforce, and particularly the peer support 

workforce, including through using new HCBS dollars and mobile crisis dollars available 

through the American Rescue Plan and new block grant and Certified Community 

Behavioral Health Center (CCBHC) funds. States should ensure that their service systems 

include robust peer support services.

■ Provide guidance, training and supplies to support community-based mental health 

provider needs related to new and increased operational needs raised during the 

pandemic, including paying for Zoom licenses to ensure access to tele-mental health 

services.

■ Invest in peer-run services including peer crisis respite centers, peer “bridger” services 

that help individuals transitioning from institutional to community settings, and peer-run 

services for individuals experiencing suicidal thoughts.

■ Expand supported employment services using the Individual Placement and Support (IPS) 

model. Peer specialists should be part of the IPS teams.

■ Make efforts to diversify the mental health workforce so that it reflects the racial, ethnic, 

cultural, sexual orientation, and gender identity diversity of the communities it serves. 

(continued)

The Impact of COVID-19 on People with Disabilities 199
Peer support workers should not only have lived experience with mental health disabilities 

but also reflect the lived experiences of communities of color and particularly Black 

communities.

■ Take advantage of federal Medicaid flexibilities permitted due to the public health 

emergency to suspend premiums and other cost sharing, suspend the need for prior 

authorizations for community mental health services, make advanced or supplemental 

payments to community mental health providers, increase payment rates for these 

services, allow early or extended refills of medication without prior authorization, and add 

benefits including peer support, supported employment, and housing-related services.

■ Take advantage of CMS guidance allowing states to request authority for advance payments 

to providers in order to support community mental health providers at risk of closure.

■ Reconcile the important suicide prevention measure of removing lethal means from 

individuals’ environments with privacy and equity concerns. Removal efforts most 

commonly take the form of “extreme risk protection orders” that allow the removal 

of guns from individuals’ homes when those individuals have engaged in conduct that 

indicates that continuing to possess a gun would be dangerous. Such laws should identify 

individuals based on conduct and not based on a disability diagnosis, treatment, or history.

■ Review evidence on effective suicide prevention efforts. Rather than focusing on trying 

to screen and identify individuals who may be suicidal and involuntarily hospitalizing 

them, suicide prevention efforts should focus on approaches that address the underlying 

problems that cause people to consider suicide. These should include helping individuals 

secure housing, preventing evictions, and helping individuals secure and maintain 

employment. They should also include peer-run support services for individuals who are 

experiencing suicidal thoughts.

Recommendations for States: continued

200 National Council on Disability
Appendix A: Convening Participants

November 10, 2020: Convening on Education, Employment, 

Mental Health, Suicide Prevention Policy*

Alexis DeLaCruz Staff attorney with Native American Disability Law Center whose work 

includes litigating on behalf of Native American students with disabilities

Alissa Fernandez Disability activist and mental health peer support specialist, founder of Peer 

Mental Health Alliance

Allison Nichol Director of Legal Advocacy with the Epilepsy Foundation, former Deputy Chief 

of the Disability Rights Section in the federal Department of Justice

Brian East Senior Attorney, Disability Rights Texas whose work includes litigating disability 

rights and employment litigation

Denise Marshall Education specialist and Executive Director of the Council of Parent Attorneys 

and Advocates (COPAA)

Diane Berman K-12 teacher who received an employment accommodation to teach remotely, 

inclusion trainer for college education students, parent of children with 

disabilities

Joel Boehner Assistant Director of Exceptional Learners with South Bend Community School 

Corporation, former Executive Director of InSource, a Parent and Training 

Information Center in Indiana

Paula West-Hernandez Project Manager for Region 2 at Team of Advocates for Special Kids (TASK)

Sera Davidow Peer advocate and Director of Western Massachusetts Recovery Learning 

Community (RLC)

Susan Stefan Attorney and advocate for people diagnosed with psychiatric disabilities, 

affiliated with Massachusetts Committee for Public Counsel Services

November 12, 2020: Healthcare Discrimination, Congregate Care Facilities, 

Direct Care Workforce

Alyssa M Burgart Pediatric anesthesiologist and bioethicist, Clinical Associate Professor, 

Department of Anesthesiology, Perioperative & Pain Medicine, Stanford Center 

for Biomedical Ethics, Stanford University, Lucile Packard Children’s Hospital

Anaya Robinson Associate Director, Atlantis Community, Inc., Denver

Andres Gallegos Disability Rights Attorney, Robbins, Salomon & Patt, LTD. and NCD Council 

Member

* Note that the topic of Effective Communication was raised and discussed in both convenings.

The Impact of COVID-19 on People with Disabilities 201
Devan Stahl Assistant Professor of Bioethics, Baylor University

Elizabeth Pendo Joseph J. Simeone Professor of Law, Saint Louis University School of Law

Gelila Selassie Staff Attorney, Justice in Aging

Gloria Ramsey Associate Dean for Diversity, Equity and Inclusion, Johns Hopkins School of 

Nursing

Hannah Karpilow Personal Care Attendant, Hand in Hand member, SEIU 2015 member

Jennifer Steneberg Attorney, Dale Law Firm, P.C., support person for sibling with disabilities

Joni Mahler Educational Therapist, adult child of a parent living in a memory care facility

Kristina Bas Hamilton Legislative Director, UDW/AFSCME Local 3930

Kristi Kirschner Physiatrist, Clinical Professor, Departments of Medical Education; Neurology 

and Rehabilitation; and Academic Internal Medicine University of Illinois 

College of Medicine and Adjunct, Department of Disability and Human 

Development, College of Allied Health Sciences, University of Illinois, Chicago

Larry Grable Executive Director, Service Center for Independent Life, California

Lindsay Imai Hong California Director, Hand in Hand, The Domestic Employers Network

Lisa Iezzoni Professor of Medicine, Harvard Medical School, Health Policy Research Center, 

Mongan Institute, Massachusetts General Hospital

Marty Knisley Director, Technical Assistance Collaborative

Rick Rader Internist and Medical Anthropologist, Director of the Morton J. Kent 

Habilitation Center, Orange Grove Center, NCD Council Member

Steven Barnett Professor, Department of Family Medicine, University of Rochester School of 

Medicine & Dentistry and Director, Rochester Prevention Research Center: 

National Center for Deaf Health Research (RPRC/NCDHR)

Tara Lagu Internist, Director, Center for Health Services and Outcomes, Northwestern 

University Institute of Public Health and Medicine

Tom Heinz Executive Director, East Bay Innovations

Wendy Eisenbeisz Parent, support person for adult son with disabilities

DREDF and Bazelon Representatives Present at Both Convenings

Brit Vanneman David and Mickey Bazelon Fellow, Bazelon

Carly Myers Staff Attorney, DREDF

Claudia Center Legal Director, DREDF

Jennifer Mathis Deputy Legal Director & Director of Policy & Legal Advocacy, Bazelon

Mary Lou Breslin Senior Policy Advisor, DREDF

Silvia Yee Senior Staff Attorney, DREDF

Susan Henderson Executive Director, DREDF

202 National Council on Disability
Endnotes

1 P.L. 93-112, 87 Stat. 355, (and as subsequently amended), 29 U.S.C.A. §§ 701 et. seq.

2 P.L. 101-476, 104 Stat. 1142, (and as subsequently amended), 20 U.S.C.A. §§ 1400 et. seq.

3 P.L. 101-336, 104 Stat. 327, (and as subsequently amended), 42 U.S.C. Ch. 126 §§ 12101 et seq. (July 26, 1990).

4 G. L. Krahn, D. Klein Walker, and R. Correa-De-Araujo, “Persons with Disabilities as an Unrecognized Health 

Disparity Population,” American Journal of Public Health 105 (2015): S198–S206. https://doi.org/10.2105

/AJPH.2014.302182; S. Yee, M. Breslin, et al., Compounded Disparities: Health Equity at the Intersection 

of Disability, Race, and Ethnicity, Nat’l Acads. Sci., Eng’g, & Med. (2017), https://dredf.org/wp-content

/uploads/2018/01/Compounded-Disparities-Intersection-of-Disabilities-Race-and-Ethnicity.pdf.

5 A. J. Gallegos, “Misperceptions of People with Disabilities Lead to Low-Quality Care: How Policy Makers Can 

Counter the Harm and Injustice,” Health Affairs (Blog), April 1, 2021, https://www.healthaffairs.org/do/10.1377

/hblog20210325.480382/full/.

6 National Council on Disability, “Medical Futility and Disability Bias,” Part of the Bioethics and Disability Series, 

November 20, 2019, https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf.; M. Crossley, 

“Ending-Life Decisions: Some Disability Perspectives,” Georgia State University Law Review 33, no. 4 (2017), 

893–922, https://readingroom.law.gsu.edu/cgi/viewcontent.cgi?article=2897&context=gsulr.

7 National Council on Disability, Enforceable Accessible Medical Equipment Standards: A Necessary Means 

to Address the Healthcare Needs of People with Mobility Disabilities, May 20, 2021, https://ncd.gov/sites

/default/files/Documents/NCD_Medical_Equipment_Report.docx; N. R. Mudrick, L. C. Swager, and M. Breslin, 

“Presence of Accessible Equipment and Interior Elements in Primary Care Offices,” Health Equity 3.1, 2019, 

275–279, https://dredf.org/wp-content/uploads/2019/10/Presence-of-Accessible-Equipment-and-Interior

-Elements-in-Primary-Care-Offices.pdf.

8 R. Kahn, Healthcare Stories (video), (2012), Disability Rights Education and Defense Fund, https://dredf.org

/healthcare-stories/2012/06/24/ruth-kahn/.

9 DREDF and Bazelon Convening on Healthcare—Healthcare Discrimination Small Group Session, November 12, 

2020.

10 See, for example, M. Fuentes, A. J. Houtrow, and M. Verduzco Gutierrez, “Ableism and Quality of Life During 

the Coronavirus Pandemic,” J. Hosp. Med., 5 (2021):316–318, (April 20, online), doi:10.12788/jhm.3615, 

authored by three physiatrists who work at three different Departments of Rehabilitation.

11 M. Reimann, “Willowbrook, The Institution that Shocked a Nation into Changing Its Laws,” Timeline, June 14, 

2017, https://timeline.com/willowbrook-the-institution-that-shocked-a-nation-into-changing-its-laws

-c847acb44e0d.

12 C. Friedman, “The Relationship Between Disability Prejudice andInstitutionalization of People with Intellectual 

and Developmental Disabilities,” Intellectual and Developmental Disabilities, 57(4) (2018); 263–273, https://doi

.org/10.1352/1934-9556-57.4.263.

13 Olmstead v. L.C., 527 U.S. 581 (1999).

14 M. Sowers, H. Claypool and M. Musumeci, “Streamlining Medicaid Home and Community-Based Services: 

Key Policy Questions,” March 11, 2016, https://www.kff.org/report-section/streamlining-medicaid-home-and

-community-based-services-key-policy-questions-issue-brief/.

15 K. Li, “A Crisis Decades in the Making: Disability Housing Policy and COVID-19,” Harvard Political Review, 

October 11, 2020, https://harvardpolitics.com/congregate-care-covid/.

The Impact of COVID-19 on People with Disabilities 203
16 National Council on Disability, “Preserving Our Freedom: Ending Institutionalization of People with Disabilities 

During and After Disasters,” National Council on Disability, May 24, 2019, https://ncd.gov/sites/default/files

/NCD_Preserving_Our_Freedom_508.pdf.

17 A. Lasek, “Multiple Jobs Held by Nurses, Direct Care Workers tTied to Coronavirus Transmission,” Clinical 

Daily News, December 9, 2020, https://www.mcknights.com/news/clinical-news/multiple-jobs-held-by-nurses

-direct-care-workers-tied-to-coronavirus-transmission/ (based on data obtained 2010-2019).

18 R. Stone, “Everybody Wins When Direct Care Workers Earn a Living Wage,” Leading Age LTSS Center 

@ UMass Boston, September 21, 2021, https://www.ltsscenter.org/everyone-wins-when-direct-care-workers

-earn-a-living-wage/.

19 Often direct care attendants are made possible by “Home and Community Based Services Waivers,” a 

program intended to reduce unnecessary institutionalization by providing funding for in-home care from 

licensed and unlicensed caregivers. “Long Term Services & Supports,” Medicaid.gov, accessed March 2, 

2021, https://www.medicaid.gov/medicaid/home-community-based-services/index.html.

20 PHI, “US Home Care Workers: Key Facts, 2019,” PHI, September 3, 2019 https://phinational.org/wp-content

/uploads/2019/08/US-Home-Care-Workers-2019-PHI.pdf.

21 Id.

22 “Broken Promises: The Underfunding of IDEA,” National Council on Disability, February 7, 2018, https://ncd

.gov/sites/default/files/NCD_BrokenPromises_508.pdf.

23 Id. at 36.

24 National Council on Disability, “2020 Progress Report on National Disability Policy: Increasing Disability 

Employment,” July 24, 2020, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

25 Id. at 11.

26 Id. at 23.

27 Id. at 25.

28 Id. at 36.

29 National Council on Disability, “Policies from the Past in a Modern Era: The Unintended Consequences of the 

AbilityOne Program & Section 14(c),” National Council on Disability, October 14, 2020, https://ncd.gov/sites

/default/files/NCD_AbilityOne_508.pdf.

30 B. Gavin, M. McCoy-Roth, and V. Gidugu “Review of Studies Regarding the Medicaid Buy-In Program,” Boston: 

Boston University, Sargent College, Center for Psychiatric Rehabilitation (2011), http://www.bu.edu/drrk

/research-syntheses/psychiatric-disabilities/medicaid-buy-in/.

31 Focusing on natural and manmade disasters, “Effective Communications for People with Disabilities: Before, 

During, and After Emergencies,” National Council on Disability, May 27, 2014, https://ncd.gov/system/files

_force/Documents/NCD_EffectiveCommunications_Apr2FINAL508%20%282%29.pdf.

32 Id. at 9.

33 L. Guidry, “Deaf Students File Suit Against Community College System,” Daily Advertiser, updated January 24, 

2018, https://www.theadvertiser.com/story/news/local/education/2018/01/19/deaf-students-file-suit-against

-community-college-system/1017710001/.

34 Complaint, Hinkle et al. v. Kent et al. No. 3:18-cv-06430 (N.D. Cal. S.F. Div.), filed October 22, 2018.

35 Settlement Agreement Between the United States of America and Good Neighbor Homes, Inc., U.S. 

Department of Justice, DJ # 202-79-369, entered October 19, 2020, https://www.ada.gov/gnhi_sa.html.

36 “Minimum Standards for Video Remote Interpreting Services in Medical Settings,” National Association for 

the Deaf, approved on July 1, 2016, updated February 13, 2018, https://www.nad.org/about-us/position

-statements/minimum-standards-for-video-remote-interpreting-services-in-medical-settings/.

37 M. McKee, C. Moran, and P. Zazove, “Overcoming Additional Barriers to Care for Deaf and Hard of Hearing 

Individuals During COVID-19,” JAMA Otolaryngol Head Neck Surg. 146(9) (2020):781–782, July 16, https://

jamanetwork.com/journals/jamaotolaryngology/fullarticle/2768217.

204 National Council on Disability
38 S. Novic, “I Was Fortunate to Get My Vaccination, But the Hurdles Are Too Great for Many Other Deaf People,” 

CNN Opinion, April 13, 2021, https://www.cnn.com/2021/04/13/opinions/deaf-americans-vaccine-hesitancy

-health-care-equity-novic/index.html.

39 E. Lund, M. Nadorff, E. S. Winer, K. Seader, “Is Suicide an Option?: The Impact of Disability on Suicide 

Acceptability in the Context of Depression, Suicidality, and Demographic Factors,” Journal of Affective 

Disorders 189 (January 1, 2016): 25–35, https://doi.org/10.1016/j.jad.2015.08.028; R. A. Cree, C. A. Okoro, 

M. M. Zack, and E. Carbone, “Frequent Mental Distress among Adults, by Disability Status, Disability Type, and 

Selected Characteristics,” Morbidity and Mortality Weekly Report 69, no.36 (September 11, 2020): 1238–1243.

40 H. Morrison, “When a Physical Disability Keeps You from Getting Mental Health Help,” Healthline, February 5, 

2020.

41 J. Maxwell, A. Bourgoin, and Z. Lindenfeld, “Battling The Mental Health Crisis among The Underserved Through 

State Medicaid Reforms,” Health Affairs Blog, February 10, 2020, https://doi.org10.1377/hblog20200205

.346125.

42 J. M. Zhu, Y. Zhang, and D. Polsky, “Networks in ACA Marketplaces Are Narrower for Mental Healthcare Than 

for Primary Care,” Health Affairs 36, no. 9 (September 2017): 1624–1631, https://www.healthaffairs.org/doi

/pdf/10.1377/hlthaff.2017.0325.

43 Wit et al. v. United Behav. Health, No. 14-CV-02346-JCS (N.D. Cal. November 3, 2020), on appeal to 9th Cir.

44 The Arc of the United States, 2018 Support Needs of People with I/DD and Co-Occurring Mental Health Challenges 

and their Families, Washington, D.C. (2019); Avery Phillips, “How Integrated Care Improves Mental Health Treatment 

for People with Physical Disabilities,” Rolling Without Limits, March 7, 2018, https://www.rollingwithoutlimits.com

/view-post/How-Integrated-Care-Improves-Mental-Health-Treatment-for-People-With-Physical-Disabilities.

45 M. Ross and N. Bateman, “Disability Rates Among Working-Age Adults Are Shaped by Race, Place, and 

Education,” Brookings, The Avenue, May 15, 2018, https://www.brookings.edu/blog/the-avenue/2018/05/15

/disability-rates-among-working-age-adults-are-shaped-by-race-place-and-education/; S. Yee et al., “Compounded 

Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, https://dredf.org/2018/01/19

/compounded-disparities-health-equity-intersection-disability-race-ethnicity/.”

Chapter One: Health Care

46 Coronaviruses are a large family of infectious diseases that usually lead to a respiratory illness. Throughout 

this paper we will refer to SARS-CoV-2, the new coronavirus that first began to infect human beings in late 

2019, as the coronavirus. We will use the term COVID-19 to refer to the disease that is caused by the SARSCoV-2 coronavirus. The pandemic that has resulted from the worldwide spread of the coronavirus will be 

referenced as the COVID-19 pandemic or simply the pandemic.

47 F. Ryan, “Coronavirus Hits Ill and Disabled People Hardest, So Why Is Society Writing Us Off?” The Guardian, 

March 11, 2020, https://www.theguardian.com/commentisfree/2020/mar/11/coronavirus-ill-disabled-people.

48 Joseph Shapiro, “A New Nursing Home Population: The Young,” National Public Radio, December 9, 2010, at 

https://www.npr.org/2010/12/09/131912529/a-new-nursing-home-population-the-young.

49 U.S. Department of Justice, Press Release, “Department of Justice Requesting Data from Governors of 

States That Issued COVID-19 Orders That May Have Resulted in Deaths of Elderly Nursing Home Residents,” 

August 26, 2020, https://www.justice.gov/opa/pr/department-justice-requesting-data-governors-states-issued

-covid-19-orders-may-have-resulted.

50 Disability Rights Education and Defense Fund, Healthcare Stories, 2011, https://dredf.org/healthcare-stories/.

51 29 U.S.C. §794.

52 42 U.S.C. §§12131–12134.

53 42 U.S.C. §§12181–12189.

54 HHS OCR, Section 1557: Frequently Asked Questions #48, https://www.hhs.gov/civil-rights/for-individuals

/section-1557/1557faqs/index.html#_ftnt29 (last visited May 29, 2021).

The Impact of COVID-19 on People with Disabilities 205
55 28 C.F.R. §35.130(7)(i) [ADA Title II]; 28 C.F.R. § 36.302 [ADA Title III]; 45 C.F.R. § 92.105 [Section 1557].

56 While the broader use of telehealth was positive for some people with disabilities, providers and health 

systems needed to take proactive steps to ensure that telehealth was usable by people across a range of 

disabilities and health care needs; see A. Bass and C. Yen, “Building Accessible Telehealth for Patients with 

Disabilities from the Ground Up,” Department of Justice, October 26, 2020, recording at https://youtu.be

/xXHgS5e86AI, documents at https://telehealthresourcecenter.org/hack-series/.

57 The COVID Tracking Project, “Long-Term Care COVID Tracker,” The Atlantic, https://covidtracking.com/nursing

-homes-long-term-care-facilities.

58 J. Shapiro, “A New Nursing Home Population: The Young,” December 9, 2010, National Public Radio, https://

www.npr.org/2010/12/09/131912529/a-new-nursing-home-population-the-young.

59 A. Curiskis, C. Kelly, E. Kissane, and K. Oehler, “What We Know—and What We Don’t Know—About 

the Impact of the Pandemic on Our Most Vulnerable Community,” March 31, 2021, The Atlantic, https://

covidtracking.com/analysis-updates/what-we-know-about-the-impact-of-the-pandemic-on-our-most-vulnerable

-community. Every state’s ability to choose for itself how to accrue nursing home deaths allowed, for example, 

New York to count only nursing home residence COVID-19 deaths when they occurred inside a nursing home, 

discounting those that occurred inside a hospital or other facility, a policy that has since garnered increasing 

criticism; M. Gold & E. Shanahan, “What We Know About Cuomo’s Nursing Home Scandal,” The New York 

Times, April 28, 2021, https://www.nytimes.com/article/andrew-cuomo-nursing-home-deaths.html.

60 U.S. Standard Certificate of Death, Rev. 11/2003, https://www.cdc.gov/nchs/data/dvs/death11-03final-acc.pdf.

61 K. Miller Temple, “Death Certificates: A Closer Look at Detail,” August 8, 2018, https://www.ruralhealthinfo

.org/rural-monitor/death-certificate-detail/.

62 S. Artiga, B. Corallo, and O. Pham, “Racial Disparities in COVID-19: Key Findings from Available Data and 

Analysis,” Kaiser Family Foundation, August 17, 2020, https://www.kff.org/racial-equity-and-health-policy

/issue-brief/racial-disparities-covid-19-key-findings-available-data-analysis/.

63 Kaiser Family Foundation, “COVID-19 Deaths By Race/Ethnicity, as of May 3, 2021,” https://www.kff.org/other

/state-indicator/covid-19-deaths-by-race-ethnicity/?currentTimeframe=0&sortModel=%7B%22colId%22:%22L

ocation%22,%22sort%22:%22asc%22%7D.

64 H. S. Kaye, “Elevated COVID-19 Mortality Risk Among Recipients of Home and Community-Based Services: 

A Case for Prioritizing Vaccination for This Population,” Disability Rights and Education Defense Fund, revised 

March 12, 2021, https://dredf.org/wp-content/uploads/2021/03/Vaccination-priority-for-HCBS-recipients

-Accessible.pdf.

65 Institute for Health Metrics and Evaluation, University of Washington, “Estimation of Total Mortality Due to 

COVID-19,” May 13, 2021, http://www.healthdata.org/special-analysis/estimation-excess-mortality-due-covid

-19-and-scalars-reported-covid-19-deaths. On May 6, 2021, the Institute for Health Metrics and Evaluation 

changed the basis of their country estimates of COVID-19 infections, hospitalizations, and deaths from 

reported COVID-19 deaths to estimation of total mortality due to COVID-19. The switch involves a more 

precise analysis of the weekly excess death rate in each country and better takes into account deaths that are 

attributable to the coronavirus being in the world, even if a death is not reported as a direct consequence of 

the virus. With the switch, the number of deaths estimated for the United States as of May 13, 2021, is over 

900,000 rather than close to 600,000.

66 M. É. Czeisler et al. “Delay or Avoidance of Medical Care Because of COVID-19–Related Concerns—United 

States,” June 2020, MMWR Morb Mortal Wkly Rep 2020;69:1250–1257. DOI: http://dx.doi.org/10.15585

/mmwr.mm6936a4. Also see data released in July 2021 on functioning and disability during the pandemic at 

https://www.cdc.gov/nchs/covid19/pulse/functioning-and-disability.htm.

67 Olmstead v. L.C., 527 U.S. 581 (1999).

68 E. L. Reaves and M. Musumeci, “Medicaid and Long-Term Services and Supports: A Primer,” Kaiser Family 

Foundation, December 15, 2015, https://www.kff.org/report-section/medicaid-and-long-term-services-and

-supports-a-primer-report-dec-2015/#endnote_link_172646-27, at note 27 and accompanying text.

206 National Council on Disability
69 K. L. Kirschner, L. I. Iezzoni, and T. Shah, “The Invisible COVID Workforce: Direct Care Workers for Those 

with Disabilities,” The Commonwealth Fund, May 21, 2020, https://www.commonwealthfund.org

/blog/2020/invisible-covid-workforce-direct-care-workers-those-disabilities; A. Cook, “State Workgroups 

Confront the Direct Care Workforce Crisis,” PHI National, October 29, 2019, https://phinational.org/news

/state-workgroups-confront-the-direct-care-workforce-crisis/.

70 In May 2020, CDC’s Division of Human Development and Disability awarded $9.75M for Strengthening Public 

Health Systems & Services through National Partnerships to ensure the needs of people with disabilities 

were addressed during COVID-19 planning, mitigation, and recovery efforts. CDC is working with the 

Association of State and Territorial Health Officials (ASTHO), the National Association of County and City 

Health Officials (NACCHO), and the Association of University Centers on Disabilities (AUCD) to ensure the 

needs of people with disabilities are addressed by: 1) including people with disabilities in local preparedness 

and response efforts; 2) improving understanding of the unique health care service needs of people with 

disabilities during the COVID-19 pandemic; and 3) engaging partners to share and disseminate resources 

for people with disabilities . Disability and preparedness specialists have been embedded in public health 

emergency preparedness planning and response programs, including 18 state health departments, 10 city 

and county health departments, and 2 territorial health departments where they are working to update local 

emergency response plans to better serve the needs of people with disabilities during national emergencies. 

Additionally, Medicaid claims data from 6 states are being analyzed to examine health outcome disparities 

by disability and COVID-19 status to inform emergency response. AUCD created an online repository of 

emergency preparedness and response resources related to COVID-19 and a COVID-19 training toolkit for 

disability service organizations.

71 J. Cohen and and Y. van der Meulen Rodgers, “Contributing Factors to Personal Protective Equipment 

Shortages During the COVID-19 Pandemic.” Preventive Medicine 141 (2020), https://www.ncbi.nlm.nih.gov

/pmc/articles/PMC7531934/.

72 J. Nicas, “He Has 17,700 Bottles of Hand Sanitizer and Nowhere to Sell Them,” March 15, 2020, The New York 

Times, https://www.nytimes.com/2020/03/14/technology/coronavirus-purell-wipes-amazon-sellers.html.

73 Federal Emergency Management Agency, COVID-19 Best Practice Information: Considerations for People 

with Disabilities, July 17, 2020, https://www.fema.gov/sites/default/files/2020-07/fema_covid_bp_disability

-considerations.pdf.

74 E. Rogers, “UC Berkeley Testing Facilities Pose Challenges for Some Students with Disabilities,” The Daily 

Californian, updated October 22, 2020, https://www.dailycal.org/2020/10/21/uc-berkeley-covid-19-testing

-facilities-pose-challenges-for-some-students-with-disabilities/.

75 A. L. Cochrane, “Impacts of COVID-19 on Access to Transportation for People with Disabilities,” Transportation 

Research Interdisciplinary Perspectives 8 (November 2020), https://doi.org/10.1016/j.trip.2020.100263.

76 In 2018, the median annual household income of US households that do not include any working age (ages 

21–64) people with a disability was $74,400 (plus or minus $270), compared to $ 46,900 (plus or minus 

$510) for households that included any working-age people with a disability. W. Erickson, C. Lee, and S. von 

Schrader, “Disability Statistics from the 2018 American Community Survey (ACS),” Cornell University Yang-Tan 

Institute (YTI), (Ithaca, NY: 2001), www.disabilitystatistics.org.

77 A. L. Cochrane, “Impacts of Covid-19 on Access to Transportation,” Transportation Research Interdisciplinary 

Perspectives 8 (November 2020), https://doi.org/10.1016/j.trip.2020.100263.

78 C. Silva, “Food Insecurity In the U.S. by the Numbers,” National Public Radio, September 27, 2020, https://

www.npr.org/2020/09/27/912486921/food-insecurity-in-the-u-s-by-the-numbers,

79 J. Pytalski, “Rural People with Disabilities Fight to Retain Independence During Pandemic,” Daily Yonder, 

September 7, 2020, https://www.northcarolinahealthnews.org/2020/09/07/rural-people-with-disabilities

-fight-to-retain-independence-during-pandemic/.

80 J. Chakraborty, “Social Inequities in the Distribution of COVID-19: An Intra-categorical Analysis of People with 

Disabilities in the U.S.,” Disability Health J., 101007 (2020), 10.1016/j.dhjo.2020.101007.

The Impact of COVID-19 on People with Disabilities 207
81 Agency for Healthcare Research and Quality, Altered Standards of Care in Mass Casualty Events, AHRQ 

Publication No. 05-0043 (April 2005), https://archive.ahrq.gov/research/altstand/.

82 Id.

83 Institute of Medicine, Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: 

A Letter Report. Washington, D.C.: The National Academies Press (2009).

84 Id.

85 Ar. Ne’eman, M. A. Stein, Z. D. Berger, and D. Dorfman, “The Treatment of Disability Under Crisis Standards 

of Care: An Empirical and Normative Analysis of Change Over Time During COVID-19,” J Health Polit Policy 

Law, March 19, 2021, 9156005.doi: 10.1215/03616878-9156005. Online ahead of print.

86 See Florida Department of Health. “Pandemic Influenza: Triage and Scarce Resource Allocation Guidelines,” 

by the Pandemic Influenza Technical Advisory Committee, April 5, 2011, 27. Available at https://dredf.org

/state-medical-rationing-policies-and-guidance-project/florida/.

87 Colorado Department of Public Health and the Environment, “CDPHE All Hazards Internal Emergency 

Response and Recovery Plan, ANNEX B: Colorado Crisis Standards of Care Plan,” May 10, 2018, 78, https://

cha.com/wp-content/uploads/2018/10/Crisis-Standards-of-Care-05102018-FINAL.pdf.

88 A. Ne’eman, M. A. Stein, Z. D. Berger, and D. Dorfman, “The Treatment of Disability Under Crisis Standards of 

Care: An Empirical and Normative Analysis of Change Over Time During COVID-19,” J Health Polit Policy Law, 

March 19, 2021, 9156005.doi: 10.1215/03616878-9156005. Online ahead of print.

89 A. Silverman, “People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as 

Coronavirus Spreads,” Propublica, March 27, 2020, https://www.propublica.org/article/people-with-intellectual

-disabilities-may-be-denied-lifesaving-care-under-these-plans-as-coronavirus-spreads.

90 HHS Office for Civil Rights, “OCR Reaches Early Case Resolution With Alabama After It Removes 

Discriminatory Ventilator Triaging Guidelines,” April 8, 2020, https://www.hhs.gov/about/news/2020/04/08/ocr

-reaches-early-case-resolution-alabama-after-it-removes-discriminatory-ventilator-triaging.html.

91 Washington State Department of Health and Northwest Healthcare Response Network, “Scarce 

Resource Management and Crisis Standards of Care,” (2020), https://nwhrn.org/wp-content/uploads

/2020/03/Scarce_Resource_Management_and_Crisis_Standards_of_Care_Overview_and_Materials-2020

-3-16.pdf.

92 Pennsylvania Department of Health. “Interim Pennsylvania Crisis Standards of Care for Pandemic Guidelines,” 

March 22, 2020, 30, https://int.nyt.com/data/documenthelper/6850-pennsylvania-triage-guidelines/02cb4c

58460e57ea9f05/optimized/full.pdf.

93 S. Cheon et al., “The Accuracy of Clinicians’ Predictions of Survival in Advanced Cancer: A Review,” Ann 

Palliat Med, 5(1) (2016):22–29, http://dx.doi.org/10.3978/j.issn.2224-5820.2015.08.04; K. M. Y. B. Leung et al., 

“Challenging the 10-Year Rule: The Accuracy of Patient Life Expectancy Predictions by Physicians in Relation 

to Prostate Cancer Management,” Can Urol Assoc J, 6(5) (2012):367–73, http://dx.doi.org/10.5489/cuaj

.11161; M. G. Clarke, “How Accurate are Doctors, Nurses and Medical Students at Predicting Life Expectancy?” 

European Journal of Internal Medicine 20 (2009): 640–644, https://www.ejinme.com/article/S0953-6205(09)

00125-3/fulltext.

94 Pennsylvania “fast tracked” an interim CSC guidance at the beginning of 2020 when it recognized that a 

global pandemic was occurring. Disability advocates in the state filed a complaint with HHS OCR against the 

interim guidance on April 3, 2020 alleging violations of federal disability civil rights laws. The state accepted 

OCR’s offer to provide technical assistance and revised its CSC guidelines. HHS OCR, “OCR Resolves Civil 

Rights Complaint Against Pennsylvania After it Revises its Pandemic Health Care Triaging Policies to Protect 

Against Disability Discrimination,” April 16, 2020, https://www.hhs.gov/about/news/2020/04/16/ocr-resolves

-civil-rights-complaint-against-pennsylvania-after-it-revises-its-pandemic-health-care.html.

95 California’s CSC guidelines, revised after extensive negotiations with disability advocates in the spring

/summer of 2000, explicitly include the need to modify sequential organ failure assessment (SOFA) scores 

208 National Council on Disability
appropriately for people with disabilities. California Department of Public Health, “California SARS-CoV-2 

Pandemic Crisis Care Guidelines,” June 2020, 26, https://www.cdph.ca.gov/Programs/CID/DCDC/CDPH%20

Document%20Library/COVID-19/California%20SARS-CoV-2%20Crisis%20Care%20Guidelines%20-June%20

8%202020.pdf.

96 A. Wong, “Does the Coronavirus Pandemic Make Someone Who is Disabled Like Me Expendable? 

Vox; 4 April 2020; available at https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19

-disabled-people-disabilities-triage?fbclid=IwAR3hVtKMShGV3Q6STEmHTLPbtYuU13SJ9EOwLQr9AryfZTo

CKdkFcOaZNQs.

97 J. Shapiro, “HHS Warns States Not to Put People with Disabilities at the Back of the Line for COVID Care.” 

National Public Radio, March 28, 2020, https://www.npr.org/2020/03/28/823254597/hhs-warns-states-not

-to-put-people-with-disabilities-at-the-back-of-the-line-for.

98 S. Fink, “Worst Case: Choosing Who Survives in a Flu Epidemic,” The New York Times, October 24, 2009, 

https://www.nytimes.com/2009/10/25/weekinreview/25fink.html.

99 J. Faryon, “Nursing Homes Have Thousands of Ventilators That Hospitals Desperately Need,” Kaiser Health 

News (blog), April 7, 2020, https://khn.org/news/nursing-homes-have-thousands-of-ventilators-that-hospitals

-desperately-need/.

100 Id.

101 J. M. Reynolds, L. Guidry-Grimes, and K. Savin, “Against Personal Ventilator Allocation,” Camb Q Healthc 

Ethics, 2020 October 2: 1–13, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7642499/#en5.

102 Disability Rights Education and Defense Fund, “Preventing Discrimination in the Treatment of COVID-19 

Patients: The Illegality of Medical Rationing on the Basis of Disability,” March 25, 2020, https://dredf.org

/the-illegality-of-medical-rationing-on-the-basis-of-disability/.

103 K. A. Gerhart et al., “Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency 

Care Providers.” Annals of Emergency Medicine 23, no. 4 (April 1994): 807–12, https://doi.org/10.1016/s0196

-0644(94)70318-3; J. Edwards et al., “Pediatric Resident Attitudes Toward Caring for Children with Severe 

Disabilities,” American Journal Physical Medicine and Rehabilitation 89, no. 9 (September 2010): 765–71, 

https://doi.org/10.1097/PHM.0b013e3181ec9936; Mary Crossley, “Ending-Life Decisions: Some Disability 

Perspectives.” Georgia State University Law Review 33, no. 4 (Summer 2017): 900–01, https://readingroom

.law.gsu.edu/gsulr/vol33/iss4/2/; L. VanPuymbrouck, C. Friedman, and H. Feldner, “Explicit and Implicit 

Disability Attitudes of Healthcare Providers,” Rehabilitation Psychology 65, no.2 (February 2020): 101–12, 

https://doi.org/10.1037/rep0000317.

104 L. I. Iezzoni et al., “Physicians’ Perceptions of People with Disability And Their Healthcare,” Health Affairs 40, 

no. 2, (February 2021): 297–306, https://doi.org/10.1377/hlthaff.2020.01452.

105 Id.

106 Id.

107 N. Bhardwaj, People with Learning Disabilities Told They Would Not Be Resuscitated If They Became Ill with 

COVID-19, Says Leading Charity,” Insider (February 14, 2021).

108 J. Shapiro, “As Hospitals Fear Being Overwhelmed by COVID-19, Do the Disabled Get the Same Access?” 

National Public Radio, December 14, 2020, https://www.npr.org/2020/12/14/945056176/as-hospitals-fear

-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc.

109 Id.

110 Id.

111 J. Shapiro, “One Man’s COVID-19 Death Raises The Worst Fears Of Many People with Disabilities,” National 

Public Radio, July 31, 2020, https://www.npr.org/2020/07/31/896882268/one-mans-covid-19-death-raises

-the-worst-fears-of-many-people-with-disabilities.

112 J. Hamblin, “An Ethicist on How to Make Impossible Decisions,” The Atlantic, April 1, 2020, https://www

.theatlantic.com/health/archive/2020/04/social-distance-ration-doctors-care/609229/.

The Impact of COVID-19 on People with Disabilities 209
113 National Council on Disability, Medical Futility and Disability Bias, November 20, 2019, https://ncd.gov/sites

/default/files/NCD_Medical_Futility_Report.docx.

114 A. Caplan, as quoted in J. Hamblin, “An Ethicist on How to Make Impossible Decisions,” The Atlantic, April 1, 

2020, https://www.theatlantic.com/health/archive/2020/04/social-distance-ration-doctors-care/609229/

115 A. Waldman and J. Kaplan, “Sent Home to Die,” ProPublica, September 2, 2020, https://www.propublica.org

/article/sent-home-to-die; J. Shapiro, “One Man’s COVID-19 Death Raises the Worst Fears of Many People 

with Disabilities,” National Public Radio, July 31, 2020, https://www.npr.org/transcripts/896882268.

116 DREDF and Bazelon Convening on Healthcare Discrimination—Healthcare Discrimination Small Group 

Session, November 12, 2020.

117 U. Lee McFarling, “Acknowledging Its ‘White Patriarchy’ and Racist Past, the AMA Pledges to Dismantle 

Causes of Health Inequities,” Stat, May 11, 2021, https://www.statnews.com/2021/05/11/ama-acknowledging

-white-patriarchy-and-racist-past-pledges-to-dismantle-causes-of-health-inequities/.

118 Sacramento City Unified Sch. Dist. Bd. of Educ. v. Rachel H., 14 F.3d 1398 (1994).

119 Olmstead v. L.C., 527 U.S. 581 (1999).

120 American Medical Association, Organizational Strategic Plan to Embed Racial Justice and Advance Health 

Equity: 2021–2023, May 11, 2021, https://www.ama-assn.org/system/files/2021-05/ama-equity-strategic

-plan.pdf, at p. 12.

121 U. Lee McFarling, “Acknowledging Its ‘White Patriarchy’ and Racist Past, the AMA Pledges to Dismantle 

Causes of Health Inequities,” Stat, May 11, 2021, https://www.statnews.com/2021/05/11/ama-acknowledging

-white-patriarchy-and-racist-past-pledges-to-dismantle-causes-of-health-inequities/

122 L. I. Iezzoni et al., “Physicians’ Perceptions of People with Disability And Their Healthcare,” Health Affairs 40, 

no. 2, (February 2021): 297–306, https://doi.org/10.1377/hlthaff.2020.01452; N. D. Agaronnik, E. Pendo, 

E. G. Campbell, J. Ressalam, L. and I. Iezzoni, “Knowledge of Practicing Physicians About Their Legal 

Obligations When Caring for Patients with Disability,” Health Affairs (Project Hope), 38(4) (April 2019):545–553, 

DOI: 10.1377/hlthaff.2018.05060.

123 See, for example, R. Korupolu et al., “COVID-19: Screening and Triage Challenges in People with Disability 

Due to Spinal Cord Injury,” Spinal Cord Ser Cases, 6: 35. May 11, 2020, doi: 10.1038/s41394-020-0284-7.

124 C. R. Butler et al., “US Clinicians’ Experiences and Perspectives on Resource Limitation and Patient Care 

During the COVID-19 Pandemic,” JAMA Network Open, November 6, 2020, 3, no. 11 (November 6, 2020), 

https://doi.org/10.1001/jamanetworkopen.2020.27315.

125 D. Leonhardt, “COVID on the Run,” The New York Times, May 21, 2021, https://www.nytimes.com/2021/05/21

/briefing/covid-19-us-pandemic-vaccinations.html?action=click&module=Top%20Stories&pgtype=Homepage.

126 A. Ne’eman, M. A. Stein, Z. D. Berger, and D. Dorfman, “The Treatment of Disability Under Crisis Standards of 

Care: An Empirical and Normative Analysis of Change Over Time During COVID-19,” J Health Polit Policy Law, 

March 19, 2021, 9156005.doi: 10.1215/03616878-9156005. Online ahead of print.

127 J. G. Hodge Jr., et al., “Diminishing Disparities in U.S. Crises Standards of Care: Medical and Legal Challenges, 

EClinicalMedicine (Published by the Lancet), Volume 34, 100838, April 1, 2021, https://www.thelancet.com

/journals/eclinm/article/PIIS2589-5370(21)00118-8/fulltext#seccesectitle0002.

128 HHS Office for Civil Rights, “BULLETIN: Civil Rights, HIPAA,and the Coronavirus Disease 2019 (COVID-19),” 

U.S. Department of Health & Human Services updated April 3, 2020, https://www.hNhs.gov/sites/default/files

/ocr-bulletin-3-28-20.pdf.

129 OCR’s complaint resolutions with the states of Alabama, Pennsylvania, Tennessee, and Utah are available 

online at https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html.

130 Many of the complaints filed against individual states, supporting documentation, press releases from HHS 

OCR and others upon complaint resolution, and revised state CSC guidelines are available at the COVID-19 

medical rationing resource page of the Center for Public Representation: https://www.centerforpublicrep.org/

covid-19-medical-rationing/.

210 National Council on Disability
131 U.S. Department of Health and Human Services, “OCR Provides Technical Assistance to Ensure Crisis 

Standards of Care Protect Against Age and Disability Discrimination,” January 14, 2021, https://www.hhs.gov

/about/news/2021/01/14/ocr-provides-technical-assistance-ensure-crisis-standards-of-care-protect-against-age

-disability-discrimination.html.

132 American Academy of Developmental Medicine and Dentistry, Committee on Public Policy and Advocacy, “People 

with Intellectual and Developmental Disabilities and the Allocation of Ventilators During the COVID-19 Pandemic,” 

Policy Statement, AADMD, April 2020, https://static1.squarespace.com/static/5cf7d27396d7760001307a44/t/5ecf

b6fff13530766aeae51a/1590671105171/Ventilator+-+Policy+Statement+w+Addendum.pdf.

133 Los Angeles Times Editorial Board, “Editorial: COVID Treatment Must Be Rationed According to Need, Not Age, 

Social Rank or Longevity,” Los Angeles Times, April 25, 2020, https://www.latimes.com/opinion/story/2020-04

-25/triage-rules-priority-ventilators.

134 J. Karlawish, “Hospitalized Adults Need Their Caregivers—They Aren’t Visitors,” Stat, March 29, 2020, https://

www.statnews.com/2020/03/29/hospitalized-adults-need-their-caregivers-they-arent-visitors/.

135 American Academy of Developmental Medicine and Dentistry, Committee on Public Policy and Advocacy, 

Hospitalized Patients & Designated Support Staff Policy Statement, SUBJECT: Providing hospitalized 

patients with Intellectual and Developmental Disabilities (IDD) with Designated Support Staff During the 

COVID19 Pandemic: Rationale for Revised Visitor’s Policy, April 2020, https://static1.squarespace.com

/static/5cf7d27396d7760001307a44/t/5e9f6551757946477ea1db06/1587504466974/Visitation-Policy

Statement.pdf.

136 Id.

137 U.S. Department of Health and Human Services Office for Civil Rights, “Emergency Preparedness: OCR Civil 

Rights Resources for COVID-19,” September 28, 2020, https://www.hhs.gov/civil-rights/for-individuals/special

-topics/emergency-preparedness/index.html.

138 U.S. Department of Health and Human Services Office for Civil Rights, “Bulletin: Civil Rights, HIPAA, and 

the Coronavirus Disease 2019 (COVID-19),” March 28, 2020, https://www.hhs.gov/sites/default/files/ocr

-bulletin-3-28-20.pdf.

139 U.S. Department of Health and Human Services Office for Civil Rights, “OCR Resolves Complaints after State 

of Connecticut and Private Hospital Safeguard the Rights of Persons with Disabilities to Have Reasonable 

Access to Support Persons in Hospital Settings During COVID-19,” June 9, 2020, https://www.hhs.gov/about

/news/2020/06/09/ocr-resolves-complaints-after-state-connecticut-private-hospital-safeguard-rights-persons

.html.

140 Id.

141 U.S. Department of Health and Human Services Office for Civil Rights, “OCR Resolves Three Discrimination 

Complaints After Medstar Health System Ensures Patients With Disabilities Can Have Support Persons in 

Healthcare Settings During Covid-19 Pandemic,” February 25, 2021, https://www.hhs.gov/about/news/2021

/02/25/ocr-resolves-three-discrimination-complaints-after-medstar-health-system.html.

142 Disability Rights D.C., CommunicationFIRST, the Center for Public Representation, the Arc of the United 

States, the Autistic Self Advocacy Network, the Civil Rights Education and Enforcement Center (CREEC), 

Quality Trust for Individuals with Disabilities, and the Washington Lawyers’ Committee for Civil Rights, 

Administrative Complaint to HHS OCR Regarding Unlawful Disability Discrimination Regarding MedStar 

Health’s COVID-19 Visitation Policy, September 16, 2020, https://www.centerforpublicrep.org/wp-content

/uploads/DC-OCR-Complaint-against-MedStar-Health-9.16.20.pdf.

143 H. Mensik, “HHS Resolves Complaint Over COVID-19 No-Visitor Policy for Patients with Disabilities,” 

Healthcare Dive, June 9, 2020, https://www.healthcaredive.com/news/hhs-resolves-complaint-over-covid-19

-no-visitor-policy-for-patients-with-di/579465/ (“[Former HHS Office for Civil Rights Director, Roger] Severino 

said the agency is receiving more complaints, though he declined to say from which states. Some have 

voluntarily changed policies without intervention.”)

The Impact of COVID-19 on People with Disabilities 211
144 Disability Rights California, Disability Rights Education and Defense Fund, Independent Living Resource 

Center San Francisco, and Justice in Aging, Press Release “Across California, Hospitals are Making Matters 

Worse for Patients with Disabilities and Older Adults During COVID-19,” August 27, 2020, https://dredf

.org/2020/08/27/across-california-hospitals-are-making-matters-worse-for-patients-with-disabilities-and-older

-adults-during-covid-19/.

145 Administrative Complaints filed with California Department of Public Health on Behalf of individuals with 

disabilities, https://dredf.org/wp-content/uploads/2020/08/combined-administrative-complaints.pdf. Many of 

the individuals with disabilities admitted to the hospital were older, four of the five were nonverbal or had 

disabilities that limited their communication, some had developmental or intellectual disabilities, which is 

a category of disabilities that is explicitly mentioned in CDPH visitation policy guidance, all had significant 

multiple disabilities, and none were admitted for COVID-19. The patients and their families were Black, Latinx, 

and white; only the Black family member and support person was escorted off the hospital premises daily by 

security personnel. Support persons variously brought copies of CDPH’s hospital visitation guidance, visitation 

advocacy materials written by disability advocacy organizations, or the HHS OCR resolution agreement with 

the state of Connecticut but were all denied admittance for periods ranging from several hours to four days.

146 California Department of Public Health, Visitor Limitations Guidance, All Facilities Letter 20-38.4 [superseded 

by 20-38.5 and 20.38.6], Posted August 7, 2020, https://canhrnews.com/visitor-limitations-guidance-5/. The 

daughter, PP, informed her mother’s care team of her detailed care needs but would arrive and find her 

mother with a blood pressure cuff on her left arm, which could not support any interventions because of a 

fistula, or repeatedly positioned in ways that raised her risk of aspiration. Once, a nurse wanted to affirm with 

PP that her mother had a DNR order and only checked the medical record after PP asserted that her mother 

“has always been full code” [authorizing the full range of medical interventions to preserve life]. In the case 

of another complainant with disabilities, the support person, who was also the mother, was simultaneously 

being denied admission over a four-day period while the hospital pressed for authorization to insert an 

abdominal feeding tube because the patient was not eating, even though the hospital was repeatedly told 

that a familiar person from her group home or her mother could help her eat. The mother decided to take her 

daughter out of the hospital where she had been admitted for a urinary tract infection. In California, CDPH has 

regulatory authority over hospitals and had issued visitation guidance by August 2020, stating that support 

persons are essential to “patients with physical, intellectual, and/or developmental disabilities and patients 

with cognitive impairments.”

147 California Department of Public Health, AFL 20-38.4.

148 DREDF and Bazelon Convening on Healthcare Discrimination—Healthcare Discrimination Small Group 

Session, November 12, 2020.

149 U.S. Food and Drug Administration, Pfizer-BioNTech COVID-19 Vaccine Fact Sheet, https://www.fda.gov

/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/pfizer-biontech-covid-19-vaccine.

150 U.S. Food and Drug Administration, Moderna COVID-19 Vaccine Fact Sheet, https://www.fda.gov/emergency

-preparedness-and-response/coronavirus-disease-2019-covid-19/moderna-covid-19-vaccine.

151 U.S. Food and Drug Administration, Janssen COVID-19 Vaccine, https://www.fda.gov/emergency-prepar

edness-and-response/coronavirus-disease-2019-covid-19/janssen-covid-19-vaccine/.

152 U.S. Food and Drug Administration, Pfizer-BioNTech COVID-19, https://www.fda.gov/news-events/press

-announcements/coronavirus-covid-19-update-fda-authorizes-pfizer-biontech-covid-19-vaccine-emergency-use

153 E. Anthes, “Pfizer and BioNTech Apply for Full U.S. Approval for Their COVID Vaccine,” New York Times, May 7, 

2021, https://www.nytimes.com/2021/05/07/world/pfizer-vaccine.html; D. E. Slotnik, “Moderna Applies for Full 

FDA Approval for its COVID Vaccine,” New York Times, June 1, 2021, https://www.nytimes.com/2021/06/01

/science/moderna-vaccine-fda-approval.html.

154 S. Baker and A. Witherspoon, “New Coronavirus Cases Fall for Fifth Week,” Axios, May 27, 2021, https://www

.axios.com/coronavirus-cases-infections-vaccines-success-7c8decf2-ea6a-4c57-8bb9-44473c3809ae.html.

212 National Council on Disability
155 S. Hansen, “U.S. Recovery Will Happen Twice as Fast Thanks to 1.9 Trillion Stimulus and Quick Vaccine Rollout,” 

Forbes, March 9, 2021, https://www.forbes.com/sites/sarahhansen/2021/03/09/us-economy-will-recover

-twice-as-fast-thanks-to-19-trillion-stimulus-and-quick-vaccine-rollout/?sh=412af4d04e98.

156 S. Soucheray, “COVID-19 Vaccinations Increases in US, but Unevenly,” University of Minnesota Center for 

Infectious Disease Control and Policy, May 28, 2021, https://www.cidrap.umn.edu/news-perspective/2021/05

/covid-19-vaccinations-increase-us-unevenly.

157 Kaiser Family Foundation Polling, “KFF COVID-19 Vaccine Monitor: Rates Inch Upwards Across Groups, But 

Few Who Are Eager to Get a Shot Remain Unvaccinated,” May 2021, https://www.kff.org/polling/.

158 Id.

159 https://www.reuters.com/world/us/us-gives-14-million-americans-first-covid-19-shot-august-up-july-2021-08-31/. 

Accessed September 2, 2021.

160 DREDF and Bazelon Convening on Healthcare Discrimination—Healthcare Discrimination Small Group 

Session, November 12, 2020.

161 Federal Emergency Management Agency, “Esperanza Community Vaccination Center Hosts Deaf Vaccination 

Day,” Updated May 1, 2021, https://www.thedenverchannel.com/news/national/vaccine-clinics-for-the-deaf

-create-access-for-people-with-hearing-loss.

162 B. Evans, “Vaccine Clinics for the Deaf Create Access for People with Hearing Loss,” The Denver Channel, 

April 27, 2021, https://www.thedenverchannel.com/news/national/vaccine-clinics-for-the-deaf-create-access

-for-people-with-hearing-loss.

163 Associated Press, “Balky Sign-Ups Complicate Vaccinations for Blind, Deaf People,” The Oregonian, Updated 

March 28, 2021, https://www.oregonlive.com/coronavirus/2021/03/balky-sign-ups-complicate-covid-19

-vaccinations-for-blind-deaf-people.html; Lauren Weber and Hannah Recht, “COVID Vaccine Websites Violate 

Disability Laws, Create Inequity for the Blind,” February 25, 2021, https://khn.org/news/article/covid-vaccine

-websites-violate-disability-laws-create-inequity-for-the-blind/.

164 U.S. Department of Health and Human Services Office for Civil Rights, “HHS Office for Civil Rights Guidance 

on Federal Legal Standards Prohibiting Disability Discrimination in COVID-19 Vaccination Programs,” April 13, 

2021, https://www.hhs.gov/sites/default/files/federal-legal-standards-prohibiting-disability-discrimination-covid

-19-vaccination.pdf.

165 Administration for Community Living, “Strategies to Improve Equitable Vaccine Access for Older Adults and 

People With Disabilities,” April 9, 2021, https://acl.gov/covid19/VaccineAccessStrategies.

166 S. H. Kaye, “Internet Access by Age, Disability, and Race/Ethnicity in the U,S.” at https://dredf.org/internet

-access-by-age-disability-and-race-ethnicity-in-the-us/

167 G. Melillo, “Disparities in COVID-19 Vaccine Rates Tarnish Swift US Rollout,” American Journal of 

Managed Care, April 1, 2021, https://www.ajmc.com/view/disparities-in-covid-19-vaccine-rates-tarnish-swift

-us-rollout.

168 K. H. Courage, “It’s Essential to Understand Why Some Healthcare Workers Are Putting off Vaccination,” 

Vox, January 11, 2021, updated february 19, 2021, https://www.vox.com/22214210/covid-vaccine-health

-care-workers-safety-fears.

169 H. Recht, R. Pradhan, and L. Weber, “Stark Racial Disparities Persist in Vaccinations, State Level CDC Data 

Shows,” Kaiser Health News, May 20, 2021, https://khn.org/news/article/covid-vaccination-stark-racial

-disparities-persist-state-level-cdc-data/?utm_campaign=KFF-2021-The-Latest&utm_medium=email&

_hsmi=128719845&_hsenc=p2ANqtz-8GPu12ykln_-Bc9DVf9CgmRxJgPWjmUugLk6aS7wH7eMf_z5Ia

A3p03JtKPDC4VZ1cWxXTMNFztERY3zUXWwzN85U03g&utm_content=128719845&utm_source=hs

_email.

170 E. Boodman, “With Painstaking Effort, Black Doctors’ Group Takes Aim at Covid-19 Vaccine Hesitancy,” 

Stat, January 22, 2021, https://www.statnews.com/2021/01/22/for-black-doctors-combatting-covid-19

-vaccine-hesitancy-starts-with-listening/.

The Impact of COVID-19 on People with Disabilities 213
171 National Academies of Sciences, Engineering, and Medicine, A Framework for Equitable Allocation of Vaccine 

for the Novel Coronavirus, October 5, 2020, https://www.nationalacademies.org/our-work/a-framework-for

-equitable-allocation-of-vaccine-for-the-novel-coronavirus.

172 Disability Rights Education and Defense Fund, Comments on Discussion Draft of the Preliminary Framework 

for Equitable Allocation of COVID-19 Vaccine Submitted Electronically to the Committee on Equitable 

Allocation of Vaccine for the Novel Coronavirus, October 1, 2020, https://dredf.org/2020/10/15/dredfs-comment

-letter-on-the-nasem-covid-19-vaccine-allocation-framework/.

173 Committee on Equitable Allocation of Vaccine for the Novel Coronavirus, Framework for Equitable Allocation 

of COVID-19 Vaccine (Washington, DC: National Academies Press, 2020) at 11 and Box 1-4, https://www.nap

.edu/read/25917/chapter/1.

174 CDC appears to have reworked its prior listings of people with conditions who are, or who might be, at 

increased risk of severe illness from coronavirus that was relied up on by the NASEM equitable vaccine 

framework committee. As of March 30, 2021, CDC has a website directed at the general public on “People 

with Certain Medical Conditions” and a website directed at health care providers on “Underlying Medical 

Conditions Associated with High Risk for Severe COVID-19: Information for Healthcare Providers.” The 

website for the general public, in its current website version updated on May 13, 2021, states “People with 

disabilities are more likely than those without disabilities to have chronic health conditions, live in congregate 

setting, and face more barriers to healthcare. Studies have shown that some people with certain disabilities 

are more likely to get COVID-19 and have worse outcomes.” These changes by CDC could be an attempt to 

counteract the tendency of numerous states, including California, New York, and Texas, to adopt the original 

CDC listings of comorbid conditions or a slightly revised version to define the group of people with disabilities 

who would be prioritized for vaccination.

175 “Comorbidities are a serious health concern . . . because the presence of two or more conditions increases 

the chances of hospitalization and the risk of death and affects quality of life. When a person experiences 

comorbid conditions, they may have a compromised immune system or need additional care that exposes 

them to others.” C. Gillespie, “What Are Comorbidities—and How Do They Affect COVID-19? Here’s What 

Experts Say,” Health, February 17, 2021, https://www.health.com/condition/infectious-diseases/coronavirus

/comorbidities-meaning-covid.

176 L. Bowen, “Whose Underlying Conditions Count for Priority In Getting the Vaccine?” Scientific American, 

February 6, 2021, https://www.scientificamerican.com/article/whose-underlying-conditions-count-for-priority

-in-getting-the-vaccine/.

177 K. Dooling, M. Marin, M, Wallace, et al. The Advisory Committee on Immunization Practices’ Updated Interim 

Recommendation for Allocation of COVID-19 Vaccine—United States, December 2020. MMWR Morb Mortal 

Wkly Rep 2021;69:1657–1660. DOI: http://dx.doi.org/10.15585/mmwr.mm695152e2.

178 A. J. Gallegos, “National Council on Disability Letter to National Governors Association Re: Vaccine Allocation,” 

February 9, 2021, https://ncd.gov/publications/2021/ncd-letter-nga-re-vaccine-allocation.

179 J. Tolbert, J. Kates, and J. Michaud, “The COVID-19 ‘Vaccination Line’: An Update on State Prioritization Plans,” 

Kaiser Family Foundation, January 11, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief/the-covid-19

-vaccination-line-an-update-on-state-prioritization-plans/.

180 Johns Hopkins University and Disability Health Research Center, COVID-19 Vaccine Prioritization Dashboard, 

as of March 2, 2021, https://disabilityhealth.jhu.edu/vaccine/.

181 J. Tolbert, J. Kates, and J. Michaud, “The COVID-19 ‘Vaccination Line’: An Update on State Prioritization Plans,” 

Kaiser Family Foundation, January 11, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief/the-covid-19

-vaccination-line-an-update-on-state-prioritization-plans/.

182 Id.

183 Id.

214 National Council on Disability
184 J. Tolbert, J. Kates, and J. Michaud, “The COVID-19 Vaccine Priority Line Continues to Change as States Make 

Further Updates,” Kaiser Family Foundation, January 21, 2021, https://www.kff.org/policy-watch/the-covid-19

-vaccine-priority-line-continues-to-change-as-states-make-further-updates/.

185 A. Harmon and D. Ivory, “How America’s Vaccine System Makes People with Health Problems Fight for a 

Place in Line,” New York Times, March 9, 2021, updated March 27, 2021, https://www.nytimes.com/2021/03/09

/us/covid-vaccine-eligible-preexisting-conditions.html?action=click&module=RelatedLinks&pgtype=Article.

186 California Department of Public Health, “Updated COVID-19 Vaccine Eligibility Guidelines,” May 12, 2021, 

https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/VaccineAllocationGuidelines.aspx.

187 L. Seidman, “Grass-Roots Groups Are Helping the Homebound Get Vaccines. They’re Racing Against the 

Clock,” Los Angeles Times, March 30, 2021, https://www.latimes.com/california/story/2021-03-30/grassroots

-groups-race-to-vaccinate-homebound-seniors-left-behind; E. Silverman, “Against the Clock,” Philadelphia 

Enquirer, April 14, 2021, https://www.inquirer.com/news/inq2/philadelphia-covid-19-vaccine-leftover-doses

-20210414.html.

188 A. Pulrang, “Disabled People Are Waiting, Anxiously, For Lifesaving Covid-19 Vaccinations,” Forbes, January 31, 

2021, https://www.forbes.com/sites/andrewpulrang/2021/01/31/disabled-people-are-waiting-anxiously-for

-lifesaving-covid-19-vaccinations/?sh=750d0e1b49b7.

189 California Department of Public Health, “California Department of Public Health Announces Membership in 

the Community Vaccine Advisory Committee to Ensure Equity in COVID-19 Vaccine Access,” November 23, 

2020, https://www.cdph.ca.gov/Programs/OPA/Pages/NR20-311.aspx.

190 B. Christopher, “Despite Months to Prep, Why California Lags on COVID Vaccination,” CalMatters, 

February 2, 2021, https://calmatters.org/health/coronavirus/2021/02/newsom-california-vaccine-delay-covid

-planning/.

191 H. S. Kaye, “New Analysis of COVID-19 Mortality Risk for Californians with Disabilities Receiving IHSS or 

DDS services, with Appendix of Demographic Data,” January 31, 2021, https://dredf.org/wp-content/uploads

/2021/02/Kaye-analysis-with-FAIR-Health-Data-and-appendix-2021-01-31.pdf. For Dr. Kaye’s national analysis 

of this issue, see “Elevated COVID-19 Mortality Risk Among Recipients of Home and Community-Based 

Services: A Case for Prioritizing Vaccination for This Population,” February 26, 2021, revised March 12, 2021, 

https://dredf.org/faq-covid-19-vaccines-and-californians-with-disabilities/.

192 Communication First, “Are AC Users at Greater Risk of Dying from COVID?” December 20, 2020 (last updated 

March 14, 2021), https://communicationfirst.org/are-aac-users-at-greater-risk-of-dying-from-covid/ (reviewing 

multiple studies published between May 2020 and March 2021, finding that people with intellectual or 

developmental disabilities are between 1.7 and 16 times more likely to die from COVID if infected than those 

who do not have intellectual or developmental disabilities);

193 K. Nemani, M.D., et al., “Association of Psychiatric Disorders With Mortality Among Patients With COVID-19,” 

JAMA, January 27, 2021, https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2775179/; V. Mazereel, 

et al., “COVID-19 Vaccination for People with Severe Mental Illness: Why, What, and How?” The Lancet, 

February 3, 2021, https://www.thelancet.com/action/showPdf?pii=S2215-0366%2820%2930564-2.

194 Office for National Statistics, “Updated Estimates of Coronavirus (COVID-19) Related Deaths by Disability 

Status, England: 24 January to 20 November 2020,” February 11, 2021, https://www.ons.gov.uk/people

populationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabili

tystatusenglandandwales/24januaryto20november2020#coronavirus-covid-19-related-deaths-by-disabilitystatus-data (study of population aged 30 to 100, and in all residential settings); British Broadcasting 

Corporation, “Covid: Disabled People Account for Six in 10 deaths in England Last Year ONS,” February 11, 

2021, https://www.bbc.com/news/uk-56033813.

195 R. C. Rabin, “Developmental Disabilities Heighten Risk of COVID Death,” New York Times, November 11, 

2020, https://www.nytimes.com/2020/11/10/health/covid-developmental-disabilities.html.

The Impact of COVID-19 on People with Disabilities 215
196 T. Jin, “Op Ed: Why is California’s Age-Based Vaccine Policy Overlooking Disabled People?” Los Angeles 

Times, January 29, 2021, https://www.latimes.com/opinion/story/2021-01-29/covid-vaccine-disabled

-people-priority.

197 California Department of Public Health, “Provider Bulletin,” February 12, 2021, updated May 12, 2021, https://

www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx.

198 Id.

199 Personal Recollection of Silvia Yee, CVAC member.

200 Id.

201 G. Pollack, “How Will CA Vaccine Sites Verify Qualifying Medical Conditions? They’ll Take Your Word for It,” 

March 12, 2021, LAist, https://laist.com/news/how-will-california-vaccine-sites-verify-qualifying-medical

-conditions-theyll-take-your-word-for-it.

202 F. Mogul, “Unvaccinated, Homebound and Now Hospitalized with Covid in New York City,” Kaiser Health 

News, June 16, 2021, https://khn.org/news/article/unvaccinated-homebound-and-now-hospitalized-with

-covid-in-new-york-city/?utm_campaign=KFF-2021-The-Latest&utm_medium=email&_hsmi=134730424&

_hsenc=p2ANqtz-9AT4GI1KIzguNxFc01mXD-bQar8MOfnZqbwvi5OTzTipxK6woGd1Um7ETwYB8QuewGUa

915i55VONJs7gATPQHNvpjPA&utm_content=134730424&utm_source=hs_email.

203 L. Frias, “Here are all the States Offering Cash Prizes as an Incentive to Get the COVID-19 Vaccine,” Insider, 

June 3, 2021, https://www.businessinsider.com/states-offering-cash-as-incentive-to-get-covid-19-vaccine

-2021-5.

204 F. Mogul, “Unvaccinated, Homebound and Now Hospitalized with Covid in New York City,” Kaiser Health 

News, June 16, 2021, https://khn.org/news/article/unvaccinated-homebound-and-now-hospitalized-with

-covid-in-new-york-city/?utm_campaign=KFF-2021-The-Latest&utm_medium=email&_hsmi=134730424&

_hsenc=p2ANqtz-9AT4GI1KIzguNxFc01mXD-bQar8MOfnZqbwvi5OTzTipxK6woGd1Um7ETwYB8QuewGUa

915i55VONJs7gATPQHNvpjPA&utm_content=134730424&utm_source=hs_email.”

205 Id.

206 DREDF and Bazelon Convening on Healthcare Discrimination—Healthcare Discrimination Small Group 

Session, November 12, 2020.

207 Centers for Disease Control and Prevention, “BRFSS Frequently Asked Questions (FAQ),” Last Reviewed 

January 2, 2018, Behavioral Risk Factor Surveillance System, https://www.cdc.gov/brfss/about/brfss_faq.htm.

208 The U.S. Census Bureau, “The American Community Survey and the 2020 Census,” https://www.census.gov

/content/dam/Census/programs-surveys/acs/about/ACS-54(HU)(3-2020).pdf.

209 Patient Protection and Affordable Care Act of 2010, § 4302, 42 U.S.C. §§ 18001 et seq., (2010).

210 U.S. Department of Health & Human Services Office of The Assistant Secretary for Planning and Evaluation, 

“U.S. Department of Health and Human Services Implementation Guidance on Data Collection Standards for 

Race, Ethnicity, Sex, Primary Language, and Disability Status,” HHS, October 31, 2011, https://aspe.hhs.gov

/basic-report/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-and

-disability-status#6.

211 R. Dorsey et al., “Implementing Health Reform: Improved Data Collection and the Monitoring, of Health 

Disparities,” Annual Review of Public Health 35, no. 1 (March 2011): 123–38, http://doi.org/10.1146/annurev

-publhealth-032013-182423.

212 FAIR Health, Risk Factors for COVID-19 Mortality Among Privately Insured Patients: A Claims Data Analysis, 

November 11, 2020, https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/Risk%20Factors%20

for%20COVID-19%20Mortality%20among%20Privately%20Insured%20Patients%20-%20 A%20Claims%20

Data%20Analysis%20-%20 A%20FAIR%20Health%20White%20Paper.pdf.

213 U.S. Department of Health & Human Services Office of The Assistant Secretary for Planning and Evaluation, 

“U.S. Department of Health and Human Services Implementation Guidance on Data Collection Standards for 

Race, Ethnicity, Sex, Primary Language, and Disability Status,” HHS, October 31, 2011, https://aspe.hhs.gov

216 National Council on Disability
/basic-report/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-and

-disability-status#6.

214 Id.

215 Institute of Medicine, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, Washington, 

DC: The National Academies Press (2003), https://doi.org/10.17226/12875.

216 N. Ndugga et al., “Latest Data on COVID-19 Vaccinations by Date/Ethnicity,” Kaiser Family Foundation, June 16, 

2021, https://www.kff.org/coronavirus-covid-19/issue-brief/latest-data-on-covid-19-vaccinations-race-ethnicity/.

217 M. M. Hughes, A. Wang, M. K. Grossman et al., “County-Level COVID-19 Vaccination Coverage and Social 

Vulnerability—United States, December 14, 2020–March 1, 2021,” MMWR Morb Mortal Wkly Rep 2021;70:

431–436. DOI: http://dx.doi.org/10.15585/mmwr.mm7012e1.

218 E. Zylla, S. Bernard, E. Lukanen, and State Health Access Data Assistance Center, “Ensuring Equity: State 

Strategies for Monitoring COVID-19 Vaccination Rates by Race and Other Priority Populations,” State Health 

and Value Strategies, June 3, 2021, https://www.shvs.org/ensuring-equity-state-strategies-for-monitoring

-covid-19-vaccination-rates-by-race-and-other-priority-populations/. (“Almost all states (47), with the exception 

of Montana, New Hampshire, Oklahoma and Wyoming, are now reporting vaccine doses administered by 

race; and 44 states are reporting doses administered by ethnicity.”)

219 Id.

220 A. Smith, “In Missouri and Other States, Flawed Data Makes It Hard to Track Vaccine Equity,” June 1, 2021, 

Shots: Health News from NPR, https://www.npr.org/sections/health-shots/2021/06/01/999155278/in-missouri

-and-other-states-flawed-data-makes-it-hard-to-track-vaccine-equity.

221 Id.

222 N. Ndugga et al., “Latest Data on COVID-19 Vaccinations by Date/Ethnicity,” Kaiser Family Foundation, 

June 16, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief/latest-data-on-covid-19-vaccinations-race

-ethnicity/

223 G. Melillo, “Disparities in COVID-19 Vaccine Rates Tarnish Swift US Rollout,” American Journal of Managed 

Care, April 1, 2021, https://www.ajmc.com/view/disparities-in-covid-19-vaccine-rates-tarnish-swift-us-rollout.”

224 Id. (quoting Dr. Jewel Mullen, associate dean for health equity and associate professor of population health 

and internal medicine at the University of Texas at Austin, Dell Medical School).

225 D. McPhillips, “States are Scaling Back on Reporting COVID-19 Data, But Some Experts Say It’s Too Soon,” 

CNN, June 11, 2021, https://www.cnn.com/2021/06/11/health/states-scale-back-covid-data-reporting/index.

html.

226 Agency for Health Research and Quality, “Race, Ethnicity, and Language Data: Standardization for Healthcare 

Quality Improvement, 5. Improving Data Collection Across the Healthcare System,” September 2012, last 

reviewed May 2018, https://www.ahrq.gov/research/findings/final-reports/iomracereport/reldata5.html.

227 A. Smith, “In Missouri and Other States,” (quoting Dr. Kirsten Bibbins-Domingo, an epidemiologist at the 

University of California, San Francisco); N. Ndugga et al., “Latest Data on COVID-19 Vaccinations by Date

/Ethnicity,” (“While the data provide useful insights, they also remain subject to gaps, limitations, and 

inconsistencies that limit the ability to get a complete picture of who is and who is not getting vaccinated.”), 

Kaiser Family Foundation, June 16, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief/latest-data

-on-covid-19-vaccinations-race-ethnicity/

228 D. McPhillips, “States are Scaling Back,” (quoting Beth Blauer, executive director of the Johns Hopkins 

University Centers for Civic Impact), CNN, June 11, 2021, https://www.cnn.com/2021/06/11/health/states

-scale-back-covid-data-reporting/index.html.

229 Institute of Medicine Committee on Disability in America, The Future of Disability in America, M. J. Field and 

A. M. Jette, Eds., Washington, DC: National Academies Press (2007); U.S. Department of Health and Human 

Services Office of Disease Prevention and Health Promotion, Healthy People 2020 [Internet], Washington, DC, 

2010, https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health; G. L. Krahn, D. Klein 

The Impact of COVID-19 on People with Disabilities 217
Walker, and R. Correa-De-Araujo, “Persons with Disabilities as an Unrecognized Health Disparity Population,” 

American Journal of Public Health 105 (2015): S198–S206. https://doi.org/10.2105/AJPH.2014.302182; 

S. Yee, M. Breslin, et al., Compounded Disparities: Health Equity at the Intersection of Disability, Race, and 

Ethnicity, Nat’l Acads. Sci., Eng’g, & Med. (2017), https://dredf.org/wp-content/uploads/2018/01/Compounded

-Disparities-Intersection-of-Disabilities-Race-and-Ethnicity.pdf.

230 D. McPhillips, “States are Scaling Back,” (quoting Beth Blauer, executive director of the Johns Hopkins 

University Centers for Civic Impact), CNN, June 11, 2021, https://www.cnn.com/2021/06/11/health/states

-scale-back-covid-data-reporting/index.html.

231 M. Musumeci and P. Chidambaram, “COVID-19 Vaccine Access for People with Disabilities,” Kaiser Family 

Foundation, March 1, 2021, https://www.kff.org/medicaid/issue-brief/covid-19-vaccine-access-for-people

-with-disabilities/.

232 Washington Group on Disability Statistics, “WG Short Set on Functioning,” https://www.washingtongroup

-disability.com/question-sets/wg-short-set-on-functioning-wg-ss/ (last visited June 21, 2021).

233 E. Zylla, S. Bernard, E. Lukanen, and State Health Access Data Assistance Center, “Ensuring Equity: State 

Strategies for Monitoring COVID-19 Vaccination Rates by Race and Other Priority Populations,” State Health 

and Value Strategies, June 3, 2021, https://www.shvs.org/ensuring-equity-state-strategies-for-monitoring

-covid-19-vaccination-rates-by-race-and-other-priority-populations/.

234 Id.

235 Id.

236 Agency for Health Research and Quality, “Race, Ethnicity, and Language Data: Standardization for Healthcare 

Quality Improvement, 5. Improving Data Collection Across the Healthcare System,” September 2012, last 

reviewed May 2018, https://www.ahrq.gov/research/findings/final-reports/iomracereport/reldata5.html.

237 Office of the National Coordinator for Health Information Technology, “Patient Demographics,” United States 

Core Data for Interoperability, https://www.healthit.gov/isa/united-states-core-data-interoperability-uscdi (last 

visited June 21, 2021).

238 M. D. Douglas, et al. “Missed Policy Opportunities to Advance Health Equity by Recording Demographic Data 

in Electronic Health Records.” American Journal of Public Health: 105 Suppl 3, (2015): S380-8. doi:10.2105

/AJPH.2014.302384.

239 Patient Protection and Affordable Care Act of 2010, § 5307, 42 U.S.C. §§ 18001 et seq., (2010).

240 This recommendation supports equity goals expressed by President Biden’s administration in, National 

Strategy for the COVID-19 Response and Pandemic Preparedness, January 21, 2021, https://www

.whitehouse.gov/wp-content/uploads/2021/01/National-Strategy-for-the-COVID-19-Response-and-Pandemic

-Preparedness.pdf.

241 Id.

Chapter Two: Impact of COVID-19 on People with Disabilities in Congregate Care Facilities

242 Centers for Disease Control and Prevention, “Long-Term Care Providers and Services Users in the United 

States: Data from the National Study of Long-Term Care Providers,” 2013–2014, February 2016, https://www

.cdc.gov/nchs/data/series/sr_03/sr03_038.pdf.

243 Kaiser Family Foundation, “State COVID-19 Data and Policy Actions,” January 8, 2020, https://www.kff.org

/coronavirus-covid-19/issue-brief/state-covid-19-data-and-policy-actions/.

244 P. Rowan et al., “A Study of the COVID-19 Outbreak and Responses in Connecticut Long-Term Care Facilities: 

Final Report,” Mathematica, September 30, 2020, https://www.mathematica.org/our-publications-and-findings

/publications/fr-a-study-of-the-covid-19-outbreak-and-response-in-connecticut-long-term-care-facilities.

245 J. B. Wogan, “Lessons from COVID-19’s Impact on Long-Term Care Facilities in Connecticut,” Mathematica, 

October 7, 2020, https://www.mathematica.org/commentary/lessons-from-covid-19 s-impact-on-long-term

-care-facilities-in-connecticut.

218 National Council on Disability
246 P. Rowan et al., “A Study of the COVID-19 Outbreak and Responses in Connecticut Long-Term Care Facilities: 

Final Report,” Mathematica, September 30, 2020, https://www.mathematica.org/our-publications-and-findings

/publications/fr-a-study-of-the-covid-19-outbreak-and-response-in-connecticut-long-term-care-facilities.

247 J. Jeffrey-Wilensky, “COVID-19 May Be Deadlier for Group Home Residents,” Spectrum News, July 23, 2020, 

https://www.spectrumnews.org/news/covid-19-may-be-deadlier-for-group-home-residents/; SD Landes et al., 

“COVID-19 outcomes among people with intellectual and developmental disability living in residential group 

homes in New York State,” Disabil Health J. 2020; 13:100969. 10.1016/j.dhjo.2020.100969.32600948.

248 “Although position papers have considered the increased risk [for] mental health problems’ exacerbation of 

health inequalities and challenges of mental health inpatient settings posed by the pandemic, to our knowledge, 

no studies to date have reported details on COVID-19 prevalence, symptoms and outcomes in inpatients 

in mental health hospitals.” Gill Livingston, MD, of the University College of London quoted in J. Gramigna, 

“Psychiatric Inpatients at Increased Risk for COVID-19 Infection, Death,” Healio, October 7, 2020, https://www

.healio.com/news/psychiatry/20201007/psychiatric-inpatients-at-increased-risk-for-covid19-infection-death.

249 J. Gleason et al., “The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the 

United States,” NEJM Catalyst, March 5, 2021, https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051.

250 K. Nemani et al., “Association of Psychiatric Disorders With Mortality Among Patients With COVID-19,” JAMA 

Psychiatry, 2021;78(4):380–386. doi:10.1001/jamapsychiatry.2020.4442

251 A. Jokich, “Nursing Homes Facing Staffing Shortages Amid Pandemic,” KSTP Eyewitness News, October 20, 

2020, https://kstp.com/news/nursing-homes-facing-staffing-shortages-amid-pandemic/5900682/

252 E. Mahon, “State-Run Psychiatric Hospital Can’t Recruit Enough Workers as Pennsylvania Risks Violating 

Federal Requirements,” Philadelphia Inquirer, December 16, 2020, https://www.inquirer.com/politics/pennsy

lvania/spl/torrance-state-hospital-staffing-federal-funding-risks-coronavirus-20201216.html.

253 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, November 12, 

2020.

254 Id.

255 P. Rowan et al., “A Study of the COVID-19 Outbreak and Responses in Connecticut Long-Term Care 

Facilities: Final Report,” Mathematica, September 30, 2020, https://www.mathematica.org/our-publications

-and-findings/publications/fr-a-study-of-the-covid-19-outbreak-and-response-in-connecticut-long-term-care

-facilities.”

256 “Covid-19 in Behavioral Health & Addiction Treatment Programs,” Staff report prepared for Senator Elizabeth 

Warren, Representative Carolyn B. Maloney, and Representative Katie Porter, November 2020, https://www

.warren.senate.gov/download/behavioral-health-facilities-covid19-report-113020-final

257 Id.

258 Id.

259 Id.

260 L. Romero and M. Deliso, “Where Nursing Home Staff Vaccinations Lag, COVID-19 Outbreaks May Follow, 

Experts Warn,” ABCNews.com, June 2021, https://abcnews.go.com/US/nursing-home-staff-vaccinations

-lag-covid-19-outbreaks/story?id=78085139; P. Cornwell, “In Washington’s Long Term Care Facilities, COVID 

Cases And Deaths Have Plummeted, But Numbers Are Ticking Up,” Seattle Times, May 2021, https://www

.seattletimes.com/seattle-news/health/in-washingtons-long-term-care-facilities-covid-cases-and-deaths-have

-plummeted-but-some-outbreaks-remain/

261 Prison Policy Initiative, “The Most Significant Criminal Justice Policy Changes from the COVID-19 Pandemic” 

(updated May 18, 2021), https://www.prisonpolicy.org/virus/virusresponse.html (cataloguing reductions in jail 

and prison populations resulting from policy initiatives and litigation).

262 National Governors Association “Supporting State Behavioral Health Systems During COVID-19 Response And 

Recovery,” Policy Memos, November 17, 2020, https://www.nga.org/wp-content/uploads/2020/11/Supporting

-State-Behavioral-Health-Systems-During-COVID-19-Response-and-Recovery.pdf.

The Impact of COVID-19 on People with Disabilities 219
263 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, 

November 12, 2020; and follow up conversations with participants.

264 M. Roppolo, “COVID Cases in New York Group Homes under Scrutiny after Nursing Home Controversy,” CBS 

News, March 2021, https://www.cbsnews.com/news/covid-new-york-group-nursing-home-numbers-cuomo

-controversy/.

265 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, 

November 12, 2020; and follow up conversations with participants.

266 In Costa v. Bazron, a federal court granted a preliminary injunction against the District of Columbia, 

requiring that its state psychiatric hospital isolate, restrict staff movement, and test staff, concluding 

“that Defendants’ delay in testing all staff and their lack of a plan to continue testing all patients and staff 

constitutes a substantial departure from professional judgment.” As of April 6, 2020, when the Plaintiffs 

filed their amended complaint seeking relief related to the COVID-19 outbreak at the hospital, at least 

33 patients, as well as at least 51 of the hospital’s staff, had tested positive for COVID-19, and at least four 

patients had died after contracting COVID-19. Ultimately 18 people died. The District of Columbia appealed 

the injunction.

In Hart v. Clendenin, filed in August 2020, advocates in California sought an emergency temporary 

restraining order on December 14, 2020, to immediately release vulnerable patients from a psychiatric 

hospital. The court issued an order on the motion. As of July 2021, 19 patients had died and hundreds of 

others were infected.

In July 2020, advocates in Massachusetts filed an emergency motion in Doe v. Mikula for a preliminary 

injunction seeking to discharge patients at Tewksbury Hospital. That motion was denied. Tewksbury Hospital 

has been particularly hard hit by COVID-19, with 170 infections and 17 deaths by June 10, 2020, which was 

more than twice the number in the entire state prison system.

On January 13, 2021, the plaintiffs in a class action case, Wilkes v. Lamont, brought against Connecticut 

based on outbreaks in two state hospitals, dismissed their case after the state implemented new safety 

protocols in the state’s psychiatric hospitals and prioritized individuals within these facilities for vaccination. 

Five patients died due to the outbreaks.

267 Affidavit of Andrew J. Phillips, M.S.W., Ed.D., June 26, 2020, filed in Doe v. Mikula (Massachusetts Superior 

Court), ¶¶ 22, 23, 27.

268 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, November 

12, 2020; and follow up conversations with participants. Two of the cases, Hart v. Clendenin

269 Olmstead v. L.C., 527 U.S. 581 (1999).

270 Id. at 600.

271 Id. at 601.

272 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, November 12, 

2020; and follow up conversations with participants.

273 Id.

274 S. Heasley, “State Will Pay $100k, Modify Disability Services Under Agreement with Feds,” DisabilityScoop.

com, June 2021, https://www.disabilityscoop.com/2021/06/08/state-will-pay-100k-modify-disability-services

-under-agreement-with-feds/29367/. The settlement can be found at https://www.justice.gov/opa/press-release

/file/1401741/download.

275 U.S. Department of Justice, “Justice Department Finds that Alameda County, California, Violates the Americans 

with Disabilities Act and the U.S. Constitution,” April 22, 2021, https://www.justice.gov/opa/pr/justice-department

-finds-alameda-county-california-violates-americans-disabilities-act-and-us.

276 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, November 12, 

2020; and follow up conversations with participants.

277 Id.

220 National Council on Disability
278 ILRU (Independent Living Research Utilization), “CIL Pandemic Response: How CILs Can Initiate Emergency 

Relocations and Transitions During the Covid-19 Pandemic, ILRU webinar, March 11, 2021, https://www.ilru

.org/training/cil-pandemic-response-how-cils-can-initiate-emergency-relocations-and-transitions-during.

279 Declaration of Dr. Patrick Canavan and Elizabeth Jones, June 8, 2020, submitted in Wilkes v. Lamont

(D. Conn.), ¶ 15.

280 See, e.g., Declaration of Dr. Patrick Canavan and Elizabeth Jones, June 8, 2020, submitted in Wilkes v. 

Lamont (D. Conn.), ¶ 25.

281 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, November 12, 

2020; and follow up conversations with participants.

282 Id.

283 Id.

284 Id.

285 Id.

286 Id.

287 Information received from CDC during technical review of this report. This guidance was not found online 

when NCD checked on August 30, 2021.

288 E.g., Centers for Medicare and Medicaid Services, Letter to State Survey Agency Directors, “Guidance for 

Infection Control and Prevention of Coronavirus Disease 2019 in Nursing Homes,” March 13, 2020, https://

www.cms.gov/files/document/3-13-2020-nursing-home-guidance-covid-19.pdf; CMS, “Covid-19 Long-Term 

Care Facility Guidance,” April 2, 2020, https://www.cms.gov/files/document/4220-covid-19-long-term-care

-facility-guidance.pdf.

289 CMS, “Guidance for Infection Control and Prevention of Coronavirus Disease 2019 (COVID-19) in 

Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) and Psychiatric Residential 

Treatment Facilities (PRTFs),” March 30, 2020, https://www.cms.gov/files/document/qso-20-23-icf-iid

-prtf.pdf.

290 Centers for Disease Control and Prevention, “Considerations When Preparing for COVID-19 in Assisted Living 

Facilities,” April 16, 2020.

291 Centers for Medicare and Medicaid Services, “Toolkit on State Actions to Mitigate COVID-19 Prevalence in 

Nursing Homes,” December 2020. This is no longer available online, butd the 23rd version of this document 

was available online when checked on August 30, 2020, at https://www.cms.gov/files/document/covid-toolkit

-states-mitigate-covid-19-nursing-homes.pdf.

292 Id.

293 P. Chidambaram, “States Reporting of Cases and Deaths Due to COVID-19 in Long-Term Care Facilities,” 

Kaiser Family Foundation, April 2020, kff.org/coronavirus-covid-19/issue-brief/state-reporting-of-cases-and

-deaths-due-to-covid-19-in-long-term-care-facilities/. This report notes that state reporting varied widely 

including with respect to which types of facilities were included as “long term care facilities.” The report 

indicates that state definitions of these facilities can include a range of settings such as nursing homes, 

assisted living facilities, personal care homes, and intermediate care facilities.

294 Centers for Disease Control and Prevention, “Guidance for Group Homes for Individuals with Disabilities,” 

May 30, 2020, https://www.cdc.gov/coronavirus/2019-ncov/community/group-homes.html; Centers for 

Disease Control and Prevention, “Guidance for Shared or Congregate Housing,” December 31, 2020, https://

www.cdc.gov/coronavirus/2019-ncov/community/shared-congregate-house/guidance-shared-congregate

-housing.html.

295 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, November 12, 

2020; and follow up conversations with participants.

296 Id. at 293.

297 NYC Health, “COVID-19: Guidance for Congregate Residential Settings,” October. 9, 2020.

The Impact of COVID-19 on People with Disabilities 221
298 PA.gov, “Guidance on COVID-19 for Personal Care Homes, Assisted Living Residences and Private 

Intermediate Care Facilities,” April 5, 2021. https://www.dhs.pa.gov/coronavirus/Pages/OLTL-Interim-Guidance

-for-PCH-ALR-ICF.aspx.

299 Id.

300 National Academies of Sciences, Engineering, and Medicine (NASEM), “Framework for Equitable Allocation of 

COVID-19 Vaccine,” National Academies Press, 2020, https://doi.org/10/17226/25917.

301 Id.

302 Id.

303 Id.

304 DREDF and Bazelon Convening on Healthcare—Congregate Living Facilities Small Group Session, 

November 12, 2020.

305 The White House, “National Strategy for the Covid-19 Response and Pandemic Preparedness,” January 2021, 

https://www.whitehouse.gov/wp-content/uploads/2021/01/National-Strategy-for-the-COVID-19-Response-and

-Pandemic-Preparedness.pdf.

306 The White House, “Executive Order on Improving and Expanding Access to Care and Treatments for COVID-19,” 

January 21, 2021, https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/21/executive-order

-improving-and-expanding-access-to-care-and-treatments-for-covid-19/

307 Id.

308 Centers for Disease Control and Prevention, “Interim Infection Prevention and Control Recommendations 

to Prevent SARS-CoV-2 Spread in Nursing Homes,” March 29, 2021, https://www.cdc.gov/coronavirus/2019

-ncov/hcp/long-term-care.html?CDC_AA_refVal=https%3 A%2 F%2Fwww.cdc.gov%2Fcoronavirus%2F2019

-ncov%2Fhcp%2Fnursing-homes-responding.html.

309 Centers for Disease Control and Prevention, “Guidance for Group Homes for Individuals with Disabilities,” 

May 30, 2020, https://www.cdc.gov/coronavirus/2019-ncov/community/group-homes.html; Centers for 

Disease Control and Prevention, “Guidance for Shared or Congregate Housing,” CDC, December 31, 2020, 

https://www.cdc.gov/coronavirus/2019-ncov/community/shared-congregate-house/guidance-shared

-congregate-housing.html.

310 U.S. Department of Health and Human Services, Office for Civil Rights, “Guidance on Federal Legal Standards 

Prohibiting Disability Discrimination in COVID-19 Vaccination Programs,” April 13, 2021, https://www.hhs.gov

/sites/default/files/federal-legal-standards-prohibiting-disability-discrimination-covid-19-vaccination.pdf.

311 Administration for Community Living, “Strategies for Helping Older Adults and People with Disabilities Access 

COVID-19 Vaccines,” April 9, 2021, https://acl.gov/sites/default/files/2021-04/ACLStrategiesVaccineAccess

_Final.pdf.

312 CMS, “COVID-19 Infection Control for Psychiatric and Intermediate Care Facilities for Individuals with 

Intellectual Disabilities (ICFs/IID),” December 17, 2020, https://www.cms.gov/files/document/qso-21-07-psych

-hospital-prtf-icf-iid.pdf.

313 CMS, “Visitation at Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) and 

Psychiatric Residential Treatment Facilities (PRTFs) - Coronavirus Disease -2019 (COVID-19),” February 10, 

2021, https://www.cms.gov/files/document/qso-21-14-icf-iid-prtf.pdf.

314 Id.

315 U.S. Department of Justice, Office of Public Affairs, “Statement by Pamela Karlan, Principal Deputy Assistant 

Attorney General of the Civil Rights Division,” February 26, 2021, https://www.justice.gov/opa/pr/statement

-pamela-karlan-principal-deputy-assistant-attorney-general-civil-rights-division.

316 Id.

317 Centers for Disease Control and Prevention, “Guidance on Management of Coronavirus Disease 2019 

(COVID-19) in Correctional and Detention Facilities,” updated December 31, 2020, https://www.cdc.gov

/coronavirus/2019-ncov/community/correction-detention/guidance-correctional-detention.html.

222 National Council on Disability
318 L. Essley Whyte, “Federal Program to Bring Vaccine to Nursing Homes Missed Around Half of Staff,” National 

Public Radio, March 31, 2021, https://www.npr.org/sections/health-shots/2021/03/31/982772372/federal

-program-to-bring-vaccine-to-nursing-homes-missed-around-half-of-staff.

319 Centers for Medicare and Medicaid Services, Interim Final Rule, “Medicare and Medicaid Programs; 

COVID-19 Vaccine Requirements for Long-Term Care (LTC) Facilities and Intermediate Care Facilities for 

Individuals With Intellectual Disabilities (ICFs-IID) Residents, Clients, and Staff,” Code of Federal Regulations, 

title 42 (May 13, 2021): 483, https://www.federalregister.gov/documents/2021/05/13/2021-10122/medicare

-and-medicaid-programs-covid-19-vaccine-requirements-for-long-term-care-ltc-facilities-and.

320 M. Musumeci et al., “Medicaid’s Money Follows the Person Program: State Progress and Uncertainty 

Pending Federal Funding Reauthorization,” November 25, 2019, Kaiser Family Foundation, https://www.kff.org

/medicaid/issue-brief/medicaids-money-follows-the-person-program-state-progress-and-uncertainty-pending

-federal-funding-reauthorization/.

321 H. Katch et al., “American Rescue Plan Act Strengthens Medicaid, Better Equips States to Combat the 

Pandemic,” March 22, 2021, Center on Budget and Policy Priorities, https://www.cbpp.org/research/health

/american-rescue-plan-act-strengthens-medicaid-better-equips-states-to-combat-the#:~:text=The%20Act%20

increases%20Medicaid’s%20federal,homes%20or%20other%20congregate%20settings.

322 “Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider 

Payment Reassignment, and Home and Community-Based Setting Requirements for Community First Choice 

and Home and Community-Based Services (HCBS) Waivers,” Code of Federal Regulations, title 42 

(January 6, 2014): 441.300-441.310, https://www.federalregister.gov/documents/2014/01/16/2014-00487

/medicaid-program-state-plan-home-and-community-based-services-5-year-period-for-waivers-provider.

323 Centers for Medicare and Medicaid Services, “CMS Issues New Guidance on State Implementation of Home 

and Community Based Services Regulation,” March 22, 2019, https://www.cms.gov/newsroom/press-releases

/cms-issues-new-guidance-state-implementation-home-and-community-based-services-regulation.

In its technical review of this section, CMS disagreed that the Trump administration weakened 

enforcement of the rule, stating that the transition period was initially extended to give states and providers 

more time to achieve compliance, and to avoid extensive disruption in service availability if noncompliant 

settings needed to cease operations such that states would have to transition individuals to a smaller number 

of compliant settings that may not have had capacity to meet the needs of all HCBS recipients.

324 CMS, “SMD # 20-003 Re: Home and Community-Based Settings Regulation—Implementation Timeline 

Extension and Revised Frequently Asked Questions,” July 14, 2020, https://www.medicaid.gov/Federal-Policy

-Guidance/Downloads/smd20003.pdf.

325 Id.

326 G. Schaak et al., “Priced Out: The Housing Crisis for People with Disabilities,” Technical Assistance 

Collaboration, Inc. and Consortium for Citizens with Disabilities Housing Task Force, December 2017, https://

www.tacinc.org/wp-content/uploads/2020/04/priced-out-in-2016.pdf.

327 A. Guerrero, “Independence Can’t Wait: New Bill in Congress Championed by The Arc Will Make Home- and 

Community-Based Services Available to All,” March 2021, https://thearc.org/independence-cant-wait-new-bill

-in-congress-championed-by-the-arc-will-make-home-and-community-based-services-available-to-all/.

328 G. Schaak et al., “Priced Out: The Housing Crisis for People with Disabilities,” Technical Assistance 

Collaboration, Inc. and Consortium for Citizens with Disabilities Housing Task Force, December 2017, https://

www.tacinc.org/wp-content/uploads/2020/04/priced-out-in-2016.pdf.

329 Pub. L No. 117-2 (March 11, 2021).

330 Centers for Medicare and Medicaid Services, “Home- and Community-Based Services,” September 2020, 

https://www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/hcbs

331 Pub. L. No. 117-2 (March 11, 2021), Section 9817. CMS issued a guidance document fleshing out further how 

these funds may be used. Centers for Medicare and Medicaid Services, “SMD# 21-003 RE: Implementation 

The Impact of COVID-19 on People with Disabilities 223
of American Rescue Plan Act of 2021 Section 9817: Additional Support for Medicaid Home and Community

-Based Services during the COVID-19 Emergency,” May 13, 2021, https://www.medicaid.gov/federal-policy

-guidance/downloads/smd21003.pdf.

332 Pub. L. No. 116-260 (December 27, 2020).

333 Department of Health and Human Services Office of the Secretary, “Report to the President and Congress: 

The Money Follows the Person (MFP) Rebalancing Demonstration,” June 2017, https://www.medicaid.gov

/sites/default/files/2019-12/mfp-rtc.pdf; M. Musumeci et al., “Medicaid’s Money Follows the Person Program: 

State Progress and Uncertainty Pending Federal Funding Reauthorization,” Nov. 25, 2019, Kaiser Family 

Foundation, https://www.kff.org/medicaid/issue-brief/medicaids-money-follows-the-person-program-state

-progress-and-uncertainty-pending-federal-funding-reauthorization/

334 Centers for Medicare and Medicaid Services, “CMS Support for Caregivers,” September 2007, https://www

.cms.gov/Outreach-and-Education/Outreach/Partnerships/Downloads/CMSCaregivers91907.pdf.

335 Kaiser Family Foundation, Medicaid Emergency Authority Tracker: Approved State Actions to Address COVID-19, 

April 19, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief/medicaid-emergency-authority-tracker

-approved-state-actions-to-address-covid-19/#Table 4.

336 Id.

337 Robert T. Stafford Disaster Relief and Emergency Assistance Act [hereinafter “Stafford Act”], 42 U.S.C. § 5174 

(1988). See also Individuals and Households Program, FEMA (July 2019), https://www.fema.gov/media-library

-data/1571949706314838a916aad698391afe34b45ac13100a/1_FACTSHEET_Individuals_and_Households

_Program.pdf (providing an overview of the program and its eligibility requirements), at 1.

338 Memorandum on Maximizing Assistance from the Federal Emergency Management Agency, February 2, 2021, 

https://www.whitehouse.gov/briefing-room/presidential-actions/2021/02/02/memorandum-maximizing

-assistance-from-the-federal-emergency-management-agency/.

339 Federal Emergency Management Agency, “Coronavirus (COVID-19) Pandemic: Non-Congregate Sheltering,” 

March 31, 2020, https://www.fema.gov/news-release/2020/03/31/coronavirus-covid-19-pandemic-non

-congregate-sheltering.

340 Id.

341 National Alliance to End Homelessness, “FEMA Response and Homelessness During COVID-19,” https://

endhomelessness.org/fema-response-and-homelessness-during-covid-19/ (last visited April 6, 2021).

342 California Office of Emergency Services, “Emergency Non-Congregate Sheltering: Approval and

Reimbursement of Costs Frequently Asked Questions (FAQ),” https://www.cdss.ca.gov/Portals/13/FEMA

/202005-Approval-of-Non-Congregate-Sheltering-FAQ-30-March2020-v2-003.pdf?ver=2020-05-12-124451-067, 

at 3-4 (last visited April 6, 2021); Letter from MaryAnn Tierney, Regional Administrator for REMA, to David R. 

Padfield, Director of P.A. Emergency Mgmt. Agency, April 3, 2020, https://www.pema.pa.gov/Recovery/Public

-Assistance/Forms/Documents/COVID19%20Documents/FEMA%20-%20Non-congregate%20sheltering%20

reimbursements%20-%20FINAL.pdf.

343 Letter from Gracia B. Szczech, Regional Administrator for FEMA Region IV, to Michael Sprayberry, Director of 

N. C. Emergency Mgmt., April 6, 2020, https://files.nc.gov/ncdhhs/documents/files/covid-19/NCEM-Statewide

-Non-Con-Shel-Response-Final.pdf.

344 Ct.gov, “Governor Lamont Provides Update on Connecticut’s Coronavirus Response Efforts,” May 26, 2020, 

https://portal.ct.gov/Office-of-the-Governor/News/Press-Releases/2020/05-2020/Governor-Lamont-Coronavirus

-Update-May-26” https://portal.ct.gov/Office-of-the-Governor/News/Press-Releases/2020/05-2020/Governor

-Lamont-Coronavirus-Update-May-26.

345 Id.

346 Federal Emergency Management Agency, “Emergency Food and Shelter Program,” May 7, 2020,), https://

www.fema.gov/media-library/assets/documents/24422.

347 Public Law No. 116-136 (March 27, 2020), Title XII.

224 National Council on Disability
348 42 U.S.C. § 11371 et seq (1987).

349 24 C.F.R. § 576.2.

350 Id.

351 CARES Act Supplemental Award Information for HOPWA Grantees at https://www.hudexchange.info/news

/cares-act-supplemental-award-information-for-hopwa-grantees/American.

352 Families First Coronavirus Response Act, Pub. L. No. 116-127, (2020), 134 Stat. 178, https://www.congress

.gov/bill/116th-congress/house-bill/6201.

353 S. 2210.

354 Instead, the tracker provides data on “household size” and only separates “correctional facilities” as a unique 

population category. Centers for Disease Control and Prevention, “Human Infection with 2019 Novel Coronavirus 

Case Report Form,” https://www.cdc.gov/coronavirus/2019-ncov/downloads/pui-form.pdf.

355 Letter from Consortium for Citizens with Disabilities to Hons. Alex Azar, Seema Verma, Robert Redfield, 

“Covid-19 Data Collection and Reporting Concerning People with Disabilities,” April 27, 2020, http://c-c-d.org

/fichiers/COVID-disability-data-collection-letter-2020-4-27.pdf.

356 The HEROES Act, H.R. 6800, 116th Cong. § 30573 (2020). In addition, the Act required the Secretary of the 

Centers for Disease Control and Prevention to award grants to State, local, and territorial health departments 

to increase data collection related to health inequities, including disability disparities, and to provide guidance, 

technical assistance, performance tracking, and reports. Id. at § 30574.

357 Paycheck Protection and Healthcare Enhancement Act, Pub. L. No. 116-142, § 102, (April 24, 2020).

358 American Rescue Plan Act of 2021, Pub. L. No. 117-2, §§ 2301, 2404 (March 11, 2021).

359 Centers for Medicare and Medicaid Services, Interim Final Rule, “Medicare and Medicaid Programs; 

COVID-19 Vaccine Requirements.”

360 The White House, “National Strategy for the Covid-19 Response and Pandemic Preparedness,” January 2021, 

https://www.whitehouse.gov/wp-content/uploads/2021/01/National-Strategy-for-the-COVID-19-Response-and

-Pandemic-Preparedness.pdf.

361 Id.

362 Id.; The White House, “Executive Order on Improving and Expanding Access to Care and Treatments for 

COVID-19,” January 21, 2021, https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/21

/executive-order-improving-and-expanding-access-to-care-and-treatments-for-covid-19/.

363 Paycheck Protection and Healthcare Enhancement Act, Pub. L. No. 116-142, Sec. 102, (April 24, 2020).

364 Instead, the tracker provides data on “household size” and only separates “correctional facilities” as a 

unique population category. Centers for Disease Control and Prevention, “Human Infection with 2019 Novel 

Coronavirus Case Report Form.”

Chapter Three: The Direct Care Workforce

365 T. A. Allison, A. Oh, and K. L. Harrison, “Extreme Vulnerability of Home Care Workers During the COVID-19 

Pandemic—A Call to Action,” JAMA Internal Medicine 180, no. 11 (2020): 1459–1460. doi:10.1001

/jamainternmed.2020.3937.

366 K. Scales, “It Is Time to Resolve the Direct Care Workforce Crisis in Long-Term Care,” The Gerontologist 61, 

no. 4 (2020): 497–504. doi:10.1093/geront/gnaa116.

367 The American Jobs Plan, described in a fact sheet released by the Biden Administration on March 31, 2021, 

proposed to “Put in place an infrastructure to create good middle-class jobs with a free and fair choice to join a 

union. The HCBS expansion under Medicaid can support well-paying caregiving jobs that include benefits and 

the ability to collectively bargain, building state infrastructure to improve the quality of services and to support 

workers. This will improve wages and quality of life for essential home health workers and yield significant 

economic benefits for low-income communities and communities of color.” “Fact Sheet: The American Jobs 

The Impact of COVID-19 on People with Disabilities 225
Plan,” The White House, last modified March 31, 2021, https://www.whitehouse.gov/briefing-room

/statements-releases/2021/03/31/fact-sheet-the-american-jobs-plan/

368 “US Home Care Workers: Key Facts (2018).” PHI National Direct Care Workforce Resource Center (2018): 5. 

https://phinational.org/national-resource-center/resource/u-s-home-care-workers-key-facts-2018/.

369 S. Campbell, et al., Caring for the Future, The Power and Potential of America’s Direct Care Workforce.

(New York: PHI, 2021), 6. https://phinational.org/resource/caring-for-the-future-the-power-and-potential

-of-americas-direct-care-workforce/.

370 S. True, et al., “COVID-19 and Workers at Risk: Examining the Long-Term Care Workforce,” Kaiser Family 

Foundation, April 23, 2020, https://www.kff.org/coronavirus-covid-19/issue-brief/covid-19-and-workers-at-risk

-examining-the-long-term-care-workforce/.

371 Id.; K. Scales, “It Is Time to Resolve the Direct Care Workforce Crisis in Long-Term Care,” The Gerontologist 

61, no. 4 (2020): 497–504. doi:10.1093/geront/gnaa116; V. Cimarolli and N. Bryant, “COVID-19: Experiences of 

Direct Care Workers in Aging Services,” LeadingAge LTSS Center, February 2021, https://www.ltsscenter.org

/wp-content/uploads/2021/02/COVID-Brief-LTSS-Feb-2021_FINAL.pdf.

372 U.S. Bureau of Labor Statistics, “Home Health Aides and Personal Care Aides: Summary,” Occupational 

Outlook Handbook, May 1, 2020, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care

-aides.htm

373 A. Verrett, “Home Care Workers Are Now Called Essential. But the History of the Profession Shows That the 

U.S. Has Never Treated Them as Such,” TIME, August 24, 2020, https://time.com/5882416/home-care-workers

-racism/; A. S. Rosenfeld, “Consider the Caregivers: Reimagining Labor and Immigration Law to Benefit 

Home Care Workers and Their Clients,” 62 B.C. L. Rev. 315 (2021), https://lawdigitalcommons.bc.edu/bclr

/vol62/iss1/8; D. Belice, “Unseen and Unheard: Experiences of Immigrants Who Work as Low-Level Healthcare 

Providers,” Bridgewater State University Undergraduate Review 14, no. 8 (2018), https://vc.bridgew.edu/cgi

/viewcontent.cgi?article=1434&context=undergrad_rev.

374 National Council on Disability, “Home and Community-Based Services: Creating Systems for Success at 

Home, at Work and in the Community,” February 24, 2015, https://ncd.gov/publications/2015/02242015.

375 M. Kinder, “Essential but Undervalued: Millions of Healthcare Workers Aren’t Getting the Pay or Respect 

They Deserve in the COVID-19 Pandemic,” Brookings Institution, May 28, 2020, https://www.brookings.edu

/research/essential-but-undervalued-millions-of-health-care-workers-arent-getting-the-pay-or-respect-they

-deserve-in-the-covid-19-pandemic/.

376 “US Home Care Workers: Key Facts (2019),” PHI National Direct Care Workforce Resource Center, 2019, 6. 

https://phinational.org/resource/u-s-home-care-workers-key-facts-2019/.

377 N. Dastur et al., “Building the Caring Economy: Workforce Investments to Expand Access to Affordable, HighQuality Early and Long-Term Care,” Georgetown Law Center on Poverty and Inequality, Spring 2017, http://www.

georgetownpoverty.org/wp-content/uploads/2017/05/Building-the-caring-economy_exec-summary_hi-res.pdf.

378 C. Anthony, “‘Staying Away From Grandma’ Isn’t An Option In Multigenerational Homes,” Kaiser Health News, 

April 6, 2020, https://khn.org/news/multigenerational-households-social-distancing-at-home-coronavirus/.

379 V. Cimarolli and N. Bryant, “COVID-19: Experiences of Direct Care Workers in Aging Services,” LeadingAge 

LTSS Center, February 2021, https://www.ltsscenter.org/wp-content/uploads/2021/02/COVID-Brief-LTSS

-Feb-2021_FINAL.pdf.

380 Centers for Disease Control and Prevention (CDC), “Health Equity Considerations and Racial and Ethnic 

Minority Groups,” April 19, 2021, https://www.cdc.gov/coronavirus/2019-ncov/community/health-equity/race

-ethnicity.html.

381 T. A. Allison, A. Oh, and K. L. Harrison, “Extreme Vulnerability of Home Care Workers During the COVID-19 

Pandemic—A Call to Action,” JAMA Internal Medicine 180, no. 11 (2020): 1459–1460. doi:10.1001

/jamainternmed.2020.3937.; S. Artiga, R. Garfield, and K. Orgera, “Communities of Color at Higher Risk 

for Health and Economic Challenges due to COVID-19,” Kaiser Family Foundation, April 7, 2020, 

226 National Council on Disability
https://www.kff.org/coronavirus-covid-19/issue-brief/communities-of-color-at-higher-risk-for-health-and

-economic-challenges-due-to-covid-19/.

382 American Association for Retired Persons (AARP) Nursing Home COVID-19 Dashboard, “Long-Term Services 

and Supports and Family Caregiving,” AARP, April 15, 2021, https://www.aarp.org/ppi/issues/caregiving/info

-2020/nursing-home-covid-dashboard.html.

383 S. Campbell, “We Can Do Better: How Our Broken Long-Term Care System Undermines Care,” PHI, 

April 21, 2020, https://phinational.org/resource/we-can-do-better-how-our-broken-long-term-care-system

-undermines-care/

384 J. Gleason et al., “The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the 

United States,” Commentary, NEJM Catalyst, March 5, 2021, https://catalyst.nejm.org/doi/full/10.1056

/CAT.21.0051.

385 R. Espinoza, “Here’s How to Improve Data on the Direct Care Workforce,” PHI, May 3, 2021, https://

phinational.org/heres-how-to-improve-data-on-the-direct-care-workforce/

386 A. Drane, M. Coye, and E. M. Friedman, “Rescue Plan Help for Family Caregivers Is a First Step,” 

Commentary, The Rand Blog, April 5, 2021, https://www.rand.org/blog/2021/04/rescue-plan-help-for-family

-caregivers-is-a-first-step.html

387 American Association for Retired Persons (AARP) and National Alliance for Caregiving, “Caregiving in the 

United States 2020,” May 2020, https://doi.org/10.26419/ppi.00103.001.

388 National Alliance for Caregiving, UsAgainstAlzheimer’s, and The Arc to the Honorable Joe Biden and the 

Honorable Kamala Harris, April 2021, “Paid Leave for Family Caregivers Across the Lifespan,” https://www

.usagainstalzheimers.org/sites/default/files/2021-04/Paid%20Family%20and%20Medical%20Leave%20

Joint%20Letter_NAC_UsAgainstAlzheimers_TheArc.pdf.

389 National Alliance for Caregiving (NAC), “Community Statement on COVID-19,” American Association of 

Caregiving Youth, ARCH National Respite Network, Caregiver Action Network, Caring Across Generations, 

the Elizabeth Dole Foundation, the Family Caregiver Alliance, the National Alliance for Caregiving, and 

the Rosalynn Carter Institute for Caregiving, Spring 2020, https://www.caregiving.org/resources

/covid-19-resources-for-families/.

390 H. Bedlin, “American Families Plan Includes Paid Family Leave,” May 4, 2021, https://www.ncoa.org/article

/american-families-plan-includes-paid:family-leave.

391 NORC at the University of Chicago, “Needs Assessment and Environmental Scan Report: Maintaining 

Physical and Mental Well-Being of Older Adults and Their Caregivers During Public Health Emergencies,” 

January 6, 2021, https://www.norc.org/PDFs/Maintaining%20Physical%20and%20Mental%20Well

/ESandNAReportNarrative.pdf.

392 C. Jones, “Paycheck or Caring for Family? Without Paid Leave, People of Color Often Must Make the 

‘Impossible Choice,’” USA Today, March 19, 2021, https://www.usatoday.com/story/money/2021/03/19

/paid:leave-shortfall-during-covid-means-job-pay-losses/4730902001/.

393 Paycheck Protection Program and Healthcare Enhancement Act, Pub. L. 116-139, (2020), 134 Stat. 620, 

https://www.congress.gov/bill/116th-congress/house-bill/266/text.

394 K. Gifford, et al., “COVID-19 Challenges: Results from a 50-State Medicaid Budget Survey for State Fiscal 

Years 2020 and 2021,” Kaiser Family Foundation, October 14, 2020, https://www.kff.org/medicaid/report

/state-medicaid-programs-respond-to-meet-covid-19-challenges/.

395 Families First Coronavirus Response Act, Pub. L. No. 116-127, (2020), 134 Stat. 178, https://www.congress.

gov/bill/116th-congress/house-bill/6201.

396 Coronavirus Aid, Relief, and Economic Security Act, Pub. L. No. 116-136, (2020), 134 Stat. 281, https://www

.congress.gov/bill/116th-congress/house-bill/748.

397 U.S. Citizenship and Immigration Services, “Final Rule on Public Charge Ground of Inadmissibility,” 

February 24, 2020, https://www.uscis.gov/archive/final-rule-on-public-charge-ground-of-inadmissibility.

The Impact of COVID-19 on People with Disabilities 227
398 National Immigration Forum, “Immigrant Access to COVID-19 Testing and Treatment,” July 17, 2020, https://

immigrationforum.org/article/immigrant-access-to-covid-19-testing-and-treatment/.

399 A. Chung, “US Supreme Court Dismisses Trump Immigration Rule Dispute,” Reuters, March 9, 2021, https://

www.reuters.com/article/us-usa-court-immigration/u-s-supreme-court-dismisses-trump-immigration-rule

-dispute-idUSKBN2B123S.

400 Centers for Medicare and Medicaid Services, “FAQS About Families First Coronavirus Response Act and 

Coronavirus Aid, Relief, and Economic Security Act Implementation Part 43,” June 23, 2020, https://www

.cms.gov/files/document/FFCRA-Part-43-FAQs.pdf.

401 N. Kurani et al., “COVID-19 Test Prices and Payment Policy,” Peterson Center on Healthcare and Kaiser Family 

Foundation, April 28, 2021, https://www.healthsystemtracker.org/brief/covid-19-test-prices-and-payment

-policy/.

402 L. Blumberg, S. Corlette, and M. Simpson, “Imposing the Costs of Workplace Coronavirus Testing on Group 

Plan Coverage Would Place an Excessive Burden on Essential Workers,” Health Affairs Blog, July 28, 2020, 

10.1377/HBLOG20200727.300119

403 Centers for Medicare and Medicaid Services, “Biden Administration Strengthens Requirements that Plans 

and Issuers Cover COVID-19 Diagnostic Testing Without Cost Sharing and Ensures Providers are Reimbursed 

for Administering COVID-19 Vaccines to Uninsured,” Newsroom, February 26, 2021, https://www.cms.gov

/newsroom/press-releases/biden-administration-strengthens-requirements-plans-and-issuers-cover-covid-19

-diagnostic-testing.

404 Modern Healthcare, “Plunging Demand for COVID-19 Tests May Leave U.S. Exposed,” Associated Press, 

February 27, 2021, https://www.modernhealthcare.com/supply-chain/plunging-demand-covid-19-tests

-may-leave-us-exposed.

405 E. Galik and R. Stephanacci, “Racial Disparities Exposed by COVID 19,” Caring for the Ages, August–

September 2020, https://www.caringfortheages.com/article/S1526-4114(20)30291-2/pdf.

406 M. R. Sterling, et al., “Experiences of Home Healthcare Workers in New York City During the Coronavirus 

Disease Pandemic,” JAMA Internal Medicine 180. no. 11 (2020): 1453–1459. https://jamanetwork.com

/journals/jamainternalmedicine/fullarticle/2769096.

407 J. Glenza, “Fauci Thanks US Health Workers for Sacrifices but Admits PPE Shortages Drove Up Death Toll,” 

Medscape, April 9, 2021, https://www.medscape.com/viewarticle/949065.

408 S. True, J. Cubanski, R. Garfield, et al., “COVID-19 and Workers at Risk: Examining the Long-Term Care 

Workforce,” Kaiser Family Foundation, April 23, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief

/covid-19-and-workers-at-risk-examining-the-long-term-care-workforce/

409 K. Gifford et al., “State Medicaid Programs Respond to Meet COVID-19 Challenges: Results from a 50-State 

Medicaid Budget Survey for State Fiscal Years 2020 and 2021,” Health Management Associates and Kaiser 

Family Foundation, October 14 2020. https://www.kff.org/medicaid/report/state-medicaid-programs

-respond-to-meet-covid-19-challenges/.

410 K. Moss et al., “The Coronavirus Aid, Relief, and Economic Security Act: Summary of Key Health Provisions,” 

Kaiser Family Foundation, April 9, 2020, https://www.kff.org/coronavirus-covid-19/issue-brief/the-coronavirus

-aid:relief-and-economic-security-act-summary-of-key-health-provisions/.

411 American Association for Retired Persons (AARP), “Long-Term Services and Supports and Family Caregiving,” 

Public Policy Institute, April 15, 2021, https://www.aarp.org/ppi/issues/caregiving/info-2020/nursing-home

-covid-dashboard.html.

412 A. Landis, “A Year Into the Pandemic, the PPE Shortage Becomes a Disconnect,” SpectrumNews NY1, 

April 2, 2021, https://www.ny1.com/nyc/all-boroughs/news/2021/04/01/a-year-into-the-pandemic-the-ppe

-shortage-becomes-a-disconnect.

413 G. Corbie-Smith, “Vaccine Hesitancy Is a Scapegoat for Structural Racism,” JAMA Health Forum 2, no. 3 

(2021). doi:10.1001/jamahealthforum.2021.0434

228 National Council on Disability
414 Kathleen Dooling et al. “The Advisory Committee on Immunization Practices’ Interim Recommendation for 

Allocating Initial Supplies of COVID-19 Vaccine—United States, 2020,” Morbidity and Mortality Weekly Report 

(MMWR) 69, no. 5151 (2020): 1857-1859. http://dx.doi.org/10.15585/mmwr.mm6949e1external icon

415 Centers for Disease Control and Prevention (CDC), “Interim List of Categories of Essential Workers Mapped 

to Standardized Industry Codes and Titles,” Accessed on August 31, 2021. https://www.cdc.gov/vaccines

/covid-19/categories-essential-workers.html.

416 Homeland Security created a long list of COVID-related essential workers that was published in August 2020.

The CDC mapped that list according to standardized industry codes, which includes numerous health carerelated job classifications such as home care workers, etc. NCD found no evidence that the list was attached 

to the December ACIP advisory. However, in that advisory, Kathleen Dooling did include “home health 

care” workers in an attached PowerPoint presentation of examples of health care personnel and also in the 

summary narrative of the advisory published on the website. After listing these examples, she went on to 

explicitly define health care personnel who were actually eligible for inclusion in Phase 1(a) as people working 

in health care “settings,” not those working in the home.

417 J. Contrera, “People with Disabilities Desperately Need the Vaccine. But States Disagree on When They’ll Get 

It,” Washington Post, January 13, 2021, https://www.washingtonpost.com/dc-md-va/2021/01/13/disabled

-coronavirus-vaccine-states/.

418 K. Dooling et al. “The Advisory Committee on Immunization Practices’ Updated Interim Recommendation 

for Allocation of COVID-19 Vaccine—United States, December 2020,” Morbidity and Mortality Weekly Report 

(MMWR) 69, no. 5151 (2021): 1657–1660. http://dx.doi.org/10.15585/mmwr.mm695152e2

419 S. Mallapaty, “Can COVID Vaccines Stop Transmission? Scientists Race to Find Answers,” Nature, February 19, 

2021, https://www.nature.com/articles/d41586-021-00450-z.

420 California Department of Public Health, “Guidelines to California’s Health Departments Allocation of COVID-19 

Vaccine During Phase 1A,” California Drafting Guidelines Workgroup, December 14, 2020, https://www.cdph

.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Allocation-Guidelines-COVID-19-Vaccine-Phase-1 A.aspx

421 Centers for Disease Control and Prevention, “Promotores de salud, also known as promotoras, is the Spanish 

term for ‘community health workers.’ The Hispanic community recognizes promotores de salud as lay health 

workers who work in Spanish-speaking communities.” Accessed on July 15, 2021, https://www.cdc.gov

/minorityhealth/promotores/index.html.

422 State of Massachussetts, Executive Office of Health and Human Services, “Home-based Healthcare Worker 

COVID-19 Vaccine—Important Update 1/8/21,” January 8, 2021, https://www.mass.gov/doc/home-based-health

-care-workers-covid-19-vaccine-important-update-english/download.

423 M. Reeves, “Florida’s Home Healthcare Workers Call on DeSantis for Vaccines,” Tampa Bay Times, February 10, 

2021, https://www.tampabay.com/news/health/2021/02/10/floridas-home-health-care-workers-call-on-desantis

-for-vaccines/.

424 S. Quinton and K. Hernandez, “Vaccinations Lag for Home Health Workers,” PEW Charitable Trust, April 13, 

2021, https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021/04/13/vaccinations-lag-for

-home-health-workers.

425 U.S. Food and Drug Administration, “Coronavirus (COVID-19) Update: FDA Authorizes Pfizer-BioNTech 

COVID-19 Vaccine for Emergency Use in Adolescents in Another Important Action in Fight Against 

Pandemic,” FDA News Release, May 10, 2021, https://www.fda.gov/news-events/press-announcements

/coronavirus-covid-19-update-fda-authorizes-pfizer-biontech-covid-19-vaccine-emergency-use

426 Centers for Disease Control and Prevention, “CDC/ATSDR Social Vulnerability Index,” Agency for Toxic 

Substances and Disease Registry, April 28, 2021, https://www.atsdr.cdc.gov/placeandhealth/svi/index

.html.

427 D. Ivory et al., “See How the Vaccine Rollout is Going in Your County and State,” New York Times, May 1, 

2020, https://www.nytimes.com/interactive/2020/us/covid-19-vaccine-doses.html.

The Impact of COVID-19 on People with Disabilities 229
428 G. Corbie-Smith, “Vaccine Hesitancy Is a Scapegoat for Structural Racism,” JAMA Health Forum 2, no. 3 

(2021), doi:10.1001/jamahealthforum.2021.0434; Sarah Schaffer DeRoo, Natalie J. Pudalov, and Linda Y. Fu, 

“Planning for a COVID-19 Vaccination Program,” JAMA Internal Medicine 323, no. 24 (2020): 2458–2459. 

doi:10.1001/jama.2020.8711.

429 S. Quinton and K. Hernandez, “Vaccinations Lag for Home Health Workers,” PEW Charitable Trust, April 13, 

2021, https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021/04/13/vaccinations-lag

-for-home-health-workers; A. Kirzinger, A. Kearney, L. Hamel, et al., “KFF/The Washington Post Frontline 

Care Workers Survey,” Kaiser Family Foundation, April 6, 2021, https://www.kff.org/report-section/kff

-washington-post-frontline-health-care-workers-survey-vaccine-intentions/.

430 Families First Coronavirus Response Act, Pub. L. No. 116-127, (2020), 134 Stat. 178, https://www.congress

.gov/bill/116th-congress/house-bill/6201.

431 National Conference of State Legislators, “Summary of HR 6201—Families First Coronavirus Response Act,” 

March 2020, https://www.ncsl.org/documents/statefed/Corona_Virus_FYI_032020.pdf; A. Zaller, “Department 

of Labor Issues Additional FAQs on Families First Coronavirus Response Act,” California Employment Law 

Report, March 29, 2020, https://www.californiaemploymentlawreport.com/2020/03/department-of-labor

-issues-additional-faqs-on-families-first-coronavirus-response-act/.

432 Congressional Research Service, “The Families First Coronavirus Response Act Leave Provisions,” In Focus, 

April 2, 2020, https://crsreports.congress.gov/product/pdf/IF/IF11487.

433 California Legislative Analyst’s Office, “Federal COVID-19 Response Actions Affecting Older Adults and 

Persons with Disabilities,” May 6, 2020, https://lao.ca.gov/Publications/Report/4221, California Department of 

Social Services, In-Home Supportive Services (IHSS) Program, Accessed on July 14, 2021, https://www.cdss

.ca.gov/in-home-supportive-services.

434 COVID-19 Supplemental Paid Sick Leave, Cal Lab. Code § 248.3.

435 Congressional Research Service, “Unemployment Insurance: Legislative Issues in the 116th Congress,” 

March 8, 2021, https://crsreports.congress.gov/product/pdf/R/R45478.

436 Consolidated Appropriations Act of 2021, Pub. L. No. 116-260 (2021), 134 Stat. 1182, https://www.congress

.gov/116/bills/hr133/BILLS-116hr133enr.pdf.

437 Id note 437.

438 Coronavirus Response and Relief Supplemental Appropriations Act, Pub. L. No. 116-260, (2020), 134 Stat. 

1909, https://www.congress.gov/bill/116th-congress/house-bill/6074.

439 Justice in Aging, “The December 2020 COVID Relief & Omnibus Spending Bill: What Advocates for 

Older Adults Need to Know,” January 2021, https://justiceinaging.org/wp-content/uploads/2021/01/COVID

-Relief-Summary-December-2020.pdf?eType=EmailBlastContent&eId=66c691fd-c15e-4f42-ba5f-496e

2b01fb2b.

440 M. Kinder, “With Federal Aid on the Way, It’s Time for State and Local Governments to Boost Pay for Frontline 

Essential Workers,” Brookings Institution, April 6, 2021, https://www.brookings.edu/blog/the-avenue/2021

/04/06/with-federal-aid:on-the-way-its-time-for-state-and-local-governments-to-boost-pay-for-frontline-essential

-workers/

441 “Governor Northam Authorizes Hazard Pay for Home Health Workers,” News Releases, October 15, 2020, 

https://www.governor.virginia.gov/newsroom/all-releases/2020/october/headline-860858-en.html

442 A. Hewitt et al., “Direct Support Workforce and COVID-19 National Report: Six-Month Follow-up,” Minneapolis: 

Institute on Community Integration, University of Minnesota, 2021, https://publications.ici.umn

.edu/community-living/covid19-survey-6-month-followup/main

443 Centers for Medicare and Medicaid Services, “CMS Announces New Federal Funding for 33 States to Support 

Transitioning Individuals from Nursing Homes to the Community,” CMS News and Media Group, September 23, 

2020, https://www.cms.gov/newsroom/press-releases/cms-announces-new-federal-funding-33-states

-support-transitioning-individuals-nursing-homes.

230 National Council on Disability
444 American Rescue Plan Act of 2021, Pub. L. No. 103-382 (2021), 134 Stat. 414, https://www.govtrack.us

/congress/bills/117/hr1319/text.

445 Centers for Medicare and Medicaid Services Letter to State Medicaid Directors Re: Implementation of 

American Rescue Plan Act of 2021 Section 9817: Additional Support for Medicaid Home and CommunityBased Services during the COVID-19 Emergency, SMD# 21-003, May 13, 2021, https://www.medicaid.gov

/federal-policy-guidance/downloads/smd21003.pdf.

446 California Health and Human Services Agency, “California’s Home and Community-Based Services Spending 

Plan,” June 3, 2021, https://www.chhs.ca.gov/blog/2021/06/03/state-health-and-human-services-leaders-issue

-joint-statement-on-release-of-californias-5-2-billion-medicaid-home-and-community-based-services-spending

-plan/ and https://www.chhs.ca.gov/wp-content/uploads/2021/06/HCBS-Spending-Plan-June-2021.pdf.

447 California Health and Human Services Agency, letter to Centers for Medicare and Medicaid Services on 

“Implementation of the American Rescue Plan Act (ARPA) of 2021 Section 9817: Additional Support for 

Medicaid Home and Community-Based Services (HCBS) During the Covid-19 Emergency,” July 12, 2021, 

https://www.dhcs.ca.gov/Documents/DHCS-HCBS-Spending-Plan-Web-Package-7-12-21.pdf.

448 Congressional Research Service, “The American Rescue Plan Act of 2021 (ARPA; P.L. 117-2): Title IX, Subtitle 

G—Tax Provisions Related to Promoting Economic Security,” March 16, 2021, https://crsreports.congress.gov

/product/pdf/R/R46680. ARPA also established a tax exemption of up to $10,200 for unemployment insurance 

benefits received in 2020 for individuals and families with incomes up to $150,000. ARPA expanded the child 

tax credit and the child and dependent care tax credit benefit to low- and middle-income families. It also 

increased premium assistance for people who have insurance through the Health Insurance Marketplace. 

The law also covered the cost of COBRA (Consolidated Omnibus Budget Reconciliation Act) premiums for 

workers who lost their jobs.

449 Administration for Community Living, National Family Caregiver Program, March 5, 2021, https://acl.gov

/programs/support-caregivers/national-family-caregiver-support-program.

450 In response to the Health Management Associates-Kaiser Family Foundation study, three states—Connecticut, 

Maine, and North Dakota—that had increased access to paid family caregiver services reported that they would 

continue allowing family members to provide certain services after the pandemic. K. Gifford, A. Lashbrook, 

S. Barth, et al.

451 Centers for Medicare and Medicaid Services, “Innovations in Medicaid: State Home and CommunityBased Services Pandemic Response and Unwinding COVID-related Waivers,” presentation at ADvancing 

States HCBS Conference, December 2020, http://www.advancingstates.org/sites/nasuad/files/u24453

/Innovations%20in%20Medicaid%20State%20HCBS%20PHE%20and%20Unwinding%20COVID%20

Final.pdf.

452 Kaiser Family Foundation, “Medicaid Emergency Authority Tracker: Approved State Actions to Address 

COVID-19,” updated February 16, 2021, https://www.kff.org/coronavirus-covid-19/issue-brief/medicaid

-emergency-authority-tracker-approved-state-actions-to-address-covid-19/#Table 3.

453 Bipartisan Budget Act of 2018, Pub. L. No. 115-123, (2018), 132 Stat. 64, https://www.congress.gov/115/plaws

/publ123/PLAW-115publ123.htm.

454 ADvancing States Annual HCBS Conference, “SSBCI You Say? The Challenges and Opportunities of New 

Medicare Advantage Supplemental Benefits,” December 8, 2020, http://www.advancingstates.org/sites

/nasuad/files/u24453/SSBCI%20You%20Say%20Medicare%20Advantage%20Supplemental%20Benefits

%20updated.pdf.

455 Supplemental services were targeted to medically complex, chronically ill individuals (SSBCI), with a high risk 

of hospitalization or other adverse health outcomes and in need of intensive care coordination. In 2021, 920 

MA plans offered at least some SSBI services, with plan distribution varying widely across the United States. 

In-home support services led the growth in nonhealth benefits, with 429 plans offering some level of this 

benefit. See ADvancing States, 2020.

The Impact of COVID-19 on People with Disabilities 231
456 Better Care Better Jobs Act (S. 2210/H.R. 4131), 117th Cong. (2021), https://www.aging.senate.gov/imo

/media/doc/Better%20Care%20Better%20Jobs%20Act%20Text%2006-21-21%20For%20Distribution.pdf, 

American Jobs First Act of 2021, H.R.865, 117th Cong. (2021), https://www.congress.gov/bill/117th-congress

/house-bill/865/text.

457 HCBS Access Act of 2021 discussion draft, https://debbiedingell.house.gov/uploadedfiles/hcbs_access

_act.pdf.

458 The Disability and Aging Collaborative and the Consortium for Citizens with Disabilities, letter to U.S. Senate 

Majority Leader Chuck Schumer and Minority Leader Mitch McConnell, and U.S. House of Representatives 

Speaker Nancy Pelosi and Minority Leader Kevin McCarthy, May 27, 2021, http://www.c-c-d.org/fichiers/CCD

-DAC-Letter-on-HCBS-400-billion-052721.pdf.

459 Better Care Better Jobs Act, (S. 2210/H.R. 4131), 117th Cong. (2021), https://www.congress.gov/bill/117th

-congress/senate-bill/2210/all-info.

460 Centers for Medicare and Medicaid Services, “Money Follows the Person,” Medicaid.gov. Accessed on April 12, 

2021, https://www.medicaid.gov/medicaid/long-term-services-supports/money-follows-person/index.html.

461 HCBS Access Act of 2021 discussion draft. The proposed legislation would also eliminate HCBS waiting lists, 

streamline access to HCBS, increase community services, support unpaid family caregivers, and improve the 

direct care workforce. It also would make permanent the Money Follows the Person demonstration program. 

https://debbiedingell.house.gov/uploadedfiles/hcbs_access_act.pdf.

462 U.S. Citizenship Act, H.R.1177, 117th Cong. (2021), https://www.congress.gov/bill/117th-congress/house

-bill/1177.

463 National Immigration Forum, “US Citizenship Act of 2021 Bill Summary,” February 24, 2021, https://

immigrationforum.org/article/u-s-citizenship-act-of-2021-bill-summary/.

464 B. W. Veghte, et.al., eds., Designing Universal Family Care: State-Based Social Insurance Programs for Early 

Child Care and Education, Paid Family and Medical Leave, and Long-Term Services and Supports, National 

Academy of Social Insurance, 2019, https://universalfamilycare.org/wp-content/uploads/2019/06/Designing

-Universal-Family-Care_Digital-Version_FINAL.pdf.

465 Community Living Assistance Services and Supports Act (“CLASS Act”), Pub. L. 111-148, (2010) 124 Stat.

 828, https://www.congress.gov/bill/111th-congress/senate-bill/697?q=%7B%22search%22%3

A%5B%22Community+Living+Assistance+Services+and+Supports+Act%22%5D%7D&s=5&r=2.

466 Kaiser Family Foundation, “Healthcare Reform and the CLASS Act,” 2010, https://www.kff.org/wp-content

/uploads/2013/01/8069.pdf.

467 M. Cohen et al., “Learning from New State Initiatives in Financing Long-Term Services and Supports,” Center 

for Consumer Engagement in Health Innovation and LeadingAge LTSS Center, July 2020, https://www

.ltsscenter.org/wp-content/uploads/2020/07/State-LTSS-Financing-Full-Report-July-2020.pdf.

468 WA Cares Fund, Washington State Department of Social and Health Services, 2021, http://www.wacaresfund

.wa.gov/.

469 Hawai’i Kapuna Care (KC) for the Elderly, Paying for Senior Care, September 27, 2020, https://www.paying

forseniorcare.com/hawaii/kapuna-care.

Chapter Four: Education and COVID-19

470 National Council on Disability, “Broken Promises: The Underfunding of IDEA,” February 7, 2018, 1, 13, https://

ncd.gov/sites/default/files/NCD_BrokenPromises_508.pdf.

471 Id. at 36.

472 Id. at 13.

473 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” November 2020, 4–5, https://www.gao.gov

232 National Council on Disability
/assets/720/710779.pdf; National Center for Education Statistics, “Table 1. Public High School 4-year Adjusted 

Cohort Graduation Rate (ACGR), by Race/Ethnicity and Selected Demographic Characteristics for the United 

States, the 50 States, and the District of Columbia: School year 2016–17, NCES,” https://nces.ed.gov/ccd

/tables/ACGR_RE_and_characteristics_2016-17.asp.

474 National Center for Education Statistics, “Table 1. Public High School 4-year Adjusted Cohort Graduation Rate 

(ACGR), by Race/Ethnicity and Selected Demographic Characteristics for the United States, the 50 States, 

and the District of Columbia: School year 2016–17, NCES,” https://nces.ed.gov/ccd/tables/ACGR_RE_and

_characteristics_2016-17.asp.

475 National Center for Education Outcomes (NCEO), “Students with Disabilities & Chronic Absenteeism,” NCEO 

Brief Number 15, April 2018, https://files.eric.ed.gov/fulltext/ED591915.pdf.

476 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” November 2020, 4–5, https://www.gao.gov

/assets/720/710779.pdf.

477 U.S. Government Accountability Office, “K-12 Education: Discipline Disparities for Black Students, Boys, and 

Students with Disabilities,” March 2018, 12, 16, https://www.gao.gov/assets/700/690828.pdf; U.S. Department 

of Education, Office for Civil Rights, “2015–16 Civil Rights Data Collection: School Climate and Safety,” 

Department of Education, updated 2018, 14, fig. 14, https://www2.ed.gov/about/offices/list/ocr/docs

/school-climate-and-safety.pdf.

478 National Council on Disability, “Broken Promises,” 42; U.S. Department of Education, Office for Civil Rights, 

“2015–16 Civil Rights Data Collection: School Climate and Safety,” 12 & fig. 12; U.S. Department of Education, 

Office for Civil Rights Civil Rights Data Collection, “Data Snapshot: School Discipline,” March 2014, 1, 9-10, 

https://ocrdata.ed.gov/assets/downloads/CRDC-School-Discipline-Snapshot.pdf.

479 See U.S. Government Accountability Office, “Seclusions and Restraints: Selected Cases of Death and Abuse 

at Public and Private Schools and Treatment Centers,” May 19, 2009, https://www.gao.gov/assets/gao-09

-719t.pdf.

480 U.S. Government Accountability Office, “K-12 Education: Discipline Disparities for Black Students, Boys, and 

Students with Disabilities,” March 2018, 16–17 https://www.gao.gov/assets/700/690828.pdf; D. J. Losen, 

“Disabling Punishment: The Need for Remedies to the Disparate Loss of Instruction Experienced by Black 

Students with Disabilities,” The Civil Rights Project and the Houston Institute, April 2018, 1, https://today

.law.harvard.edu/wp-content/uploads/2018/04/disabling-punishment-report-.pdf; “Data Snapshot: School 

Discipline,” 1, 9–10.

481 D. J. Losen, “Disabling Punishment: The Need for Remedies to the Disparate Loss of Instruction Experienced 

by Black Students with Disabilities,” The Civil Rights Project and the Houston Institute, April 2018, 1, https://

today.law.harvard.edu/wp-content/uploads/2018/04/disabling-punishment-report-.pdf; “Data Snapshot: School 

Discipline,” 1, 9–10.

482 National Council on Disability, “Breaking the School-to-Prison Pipeline for Students with Disabilities,” June 18, 

2015, 5, https://www.ncd.gov/publications/2015/06182015.

483 Id.

484 L. A. Schifter, et al., “Students from Low-Income Families and Special Education,” The Century Foundation, 

January 17, 2019, https://tcf.org/content/report/students-low-income-families-special-education/; Legislative 

Analyst’s Office (LAO), “Overview of Special Education in California,” November 6, 2019, 2, https://lao.ca.gov

/reports/2019/4110/overview-spec-ed-110619.pdf.

485 Id.

486 E. Maclean Slayter, “Youth with Disabilities in the United States Child Welfare System,” Children and Youth 

Services Review, March 2016, https://www.researchgate.net/publication/298215479_Youth_with

_Disabilities_in_the_United_States_Child_Welfare_System.

The Impact of COVID-19 on People with Disabilities 233
487 See National Center for Homeless Education, “School Help for Homeless Children with Disabilities: 

Information for Parents,” October 2015, https://nche.ed.gov/wp-content/uploads/2018/10/idea_parents

.pdf.

488 See Wisconsin Center for Education Research, “Identifying ELLs with Specific Learning Disabilities: Facts, 

Advice, and Resources for School Teams,” University of Wisconsin-Madison, 2017, https://wida.wisc.edu

/sites/default/files/resource/FocusOn-Identifying-ELLs-with-Specific-Learning-Disabilities.pdf; see also U.S. 

Government Accountability Office, “Distance Learning,” 9.

489 Testimony of Ronald Hager, Managing Attorney for Education and Employment, National Disability Rights 

Network, US House of Representatives Subcommittee on Early Childhood, Elementary, and Secondary 

Education and House Committee on Education and Labor, “Addressing the Impact of COVID-19 on Students 

with Disabilities (May 6, 2021), https://edlabor.house.gov/imo/media/doc/HagerRonaldTestimony050621

.pdf.

490 See, e.g., U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 

English Learners and Students with Disabilities During COVID-19,” November 2020, 14–15, https://www.gao

.gov/assets/720/710779.pdf; D. Willcutts, LLC, “What Do 3,263 Parents Think about Special Education During 

COVID-19 School Closures?” Wrightslaw, July 2, 2020 (39 percent of parents of children with disabilities 

reported that their district was not providing special education during school closures; of the 69 percent who 

said that their districts were providing special education, many wrote that their child was receiving minimal 

services or an amount far less than what was in the child’s IEP; only 38 percent reported that their child was 

receiving any synchronous, real-time instruction from school staff), https://www.wrightslaw.com/info/virus

.parent.survey.htm; D. Jackson and J. Bowdon, “National Survey of Public Education’s Response to COVID-19: 

Spotlight on Students with Disabilities,” American Institutes for Research, Oct. 2020 (nearly three-quarters 

(73 percent) of districts reported that it was more or substantially more difficult to provide appropriate 

instructional accommodations), https://www.air.org/sites/default/files/COVID-Survey-Spotlight-on-Students

-with-Disabilities-FINAL-Oct-2020.pdf.

491 See Disability Rights California, “Special Education During COVID-19: Stories from Across California,” 

December 12, 2020, https://www.disabilityrightsca.org/post/special-education-during-covid-19-stories-from

-across-california; R. Lake and A. Makori, “The Digital Divide Among Students During COVID-19: Who Has 

Access? Who Doesn’t?” Center on Reinventing Public Education, June 16, 2020, https://www.crpe.org

/thelens/digital-divide-among-students-during-covid-19-who-has-access-who-doesnt; USC Rossier School of 

Education and USC Annenberg School for Communication and Journalism (USC Schools), “When School 

Comes Home: How Low-income Families Are Adapting to Distance Learning,” October 2020, 12, https://

rossier.usc.edu/wp-content/uploads/2020/10/USC-Report-When-School-Comes-Home-Aguilar.pdf.

492 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” November 2020, 7, 14-15 & fig. 1, 16, https://www

.gao.gov/assets/720/710779.pdf.

493 Id. at 16.

494 Id. 14–15; F. Hill, “The Pandemic Is a Crisis for Students with Special Needs,” The Atlantic, April 18, 2020, 

https://www.theatlantic.com/education/archive/2020/04/special-education-goes-remote-covid-19

-pandemic/610231/.

495 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” November 2020, 16–17, https://www.gao.gov

/assets/720/710779.pdf.

496 See J. Napolitano, “Federal Probes Into Lack of School Services for Special Needs Students Reflect Nearly 

A Year of Parental Anguish, Advocates Say,” LA School Report, February 11, 2021, http://laschoolreport.

com/federal-probes-into-lack-of-school-services-for-special-needs-students-reflect-nearly-a-year-of-parentalanguish-advocates-say/; Disability Rights California, “Special Education During COVID-19: Stories from Across 

California,” December 12, 2020, https://www.disabilityrightsca.org/post/special-education-during-covid-19

234 National Council on Disability
-stories-from-across-california; H. Blume, “L.A. Teachers Union Opposes Opening Campuses For Students 

With Disabilities, English Learners,” Los Angeles Times, September 5, 2020, https://www.latimes.com

/california/story/2020-09-05/l-a-teachers-union-opposes-small-groups-of-students-on-campus.

497 S. Kohlistaff, “Children with Disabilities Are Regressing. How Much Is Distance Learning to Blame?” Los 

Angeles Times, August 7, 2020, https://www.latimes.com/california/story/2020-08-07/covid-19-distance

-learning-weakens-special-education; Center for Translational Neuroscience, “Overloaded: Families With 

Children Who Have Special Needs Are Bearing an Especially Heavy Weight, And Support Is Needed,” 

December 17, 2020, https://medium.com/rapid-ec-project/overloaded-families-with-children-who-have

-special-needs-are-bearing-an-especially-heavy-weight-4e613a7681bd; K. A. Graham, “The Same Four Walls,” 

Philadelphia Inquirer, May 2, 2021, https://www.inquirer.com/education/a/pandemic-learning-loss-philadelphia

-school-family-20210502.html; J. Napolitano, “Federal Probes Into Lack of School Services for Special Needs 

Students Reflect Nearly A Year of Parental Anguish, Advocates Say,” LA School Report, February 11, 2021, 

http://laschoolreport.com/federal-probes-into-lack-of-school-services-for-special-needs-students-reflect

-nearly-a-year-of-parental-anguish-advocates-say/; Disability Rights California, “Special Education During 

COVID-19: Stories from Across California,” December 12, 2020, https://www.disabilityrightsca.org/post

/special-education-during-covid-19-stories-from-across-california.”

498 M. Villano, “Students with Special Needs Face Virtual Learning Challenges,” CNN, September 24, 2020, 

https://www.cnn.com/2020/09/24/health/special-needs-students-online-learning-wellness/index.html; C. 

Turner, “Students With Disabilities Struggle To Learn Remotely,” National Public Radio, August 20, 2020, 

https://www.npr.org/2020/08/20/904195408/students-with-disabilities-struggle-to-learn-remotely; K. M. 

Soria, et al., “The Experiences of Undergraduate Students with Physical, Learning, Neurodevelopmental, 

and Cognitive Disabilities During the Pandemic,” SERU Consortium, University of California, Berkeley, and 

University of Minnesota, 2020, https://docs.google.com/document/d/1JrPktBoLN2cJHxwGwLorgCKFnlR

86klkMBe15yPbey0/edit#; S. Scott and K. Aquino, “COVID-19 Transitions: Higher Education Professionals’ 

Perspectives on Access Barriers, Services, and Solutions for Students with Disabilities,” Association on Higher 

Education And Disability, 2020, https://higherlogicdownload.s3.amazonaws.com/AHEAD/38b602f4-ec53-451c

-9be0-5c0bf5d27c0a/UploadedImages/COVID-19_/AHEAD_COVID_Survey_Report_Barriers_and_Resource

_Needs.pdf.

499 G. Anderson, “Accessibility Suffers During Pandemic,” Inside Higher Education, April 6, 2020, https://www

.insidehighered.com/news/2020/04/06/remote-learning-shift-leaves-students-disabilities-behind; J. Moody, 

“Navigating Online College as a Disabled Student,” U.S. News & World Report, August 18, 2020, https://

www.usnews.com/education/best-colleges/articles/how-to-navigate-online-college-classes-as-a-student

-with-disabilities; M. Sampathkumar and M. Shwayder, “The Mass Migration to Online Learning Is Leaving 

Disabled Students Behind,” digitaltrends, March 27, 2020, https://www.digitaltrends.com/news/disabled

-students-online-learning-coronavirus/.

500 K. M. Soria, et al., “The Experiences of Undergraduate Students with Physical, Learning, Neurodevelopmental, 

and Cognitive Disabilities During the Pandemic,” SERU Consortium, University of California, Berkeley, and 

University of Minnesota, 2020, https://docs.google.com/document/d/1JrPktBoLN2cJHxwGwLorgCKFnlR86klk

MBe15yPbey0/edit#.”

501 Id.

502 See S. Scott and K. Aquino, “COVID-19 Transitions: An Update on Access, Barriers, and Supports Nine Months 

into the Pandemic,” Association on Higher Education And Disability, 2020, https://higherlogicdownload

.s3.amazonaws.com/AHEAD/38b602f4-ec53-451c-9be0-5c0bf5d27c0a/UploadedImages/COVID-19_/AHEAD

_COVID_Report_wave_2_final.pdf; M. Williams, “S.F.’s City College May Lay Off Hundreds Amid Another 

Budget Crisis,” San Francisco Chronicle, March 11, 2021, https://www.sfchronicle.com/education/article/S-F

-s-City-College-may-lay-off-hundreds-amid-16016191.php.

503 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” November 2020, 18, https://www.gao.gov

The Impact of COVID-19 on People with Disabilities 235
/assets/720/710779.pdf; G. Naylor, L. A. Burke, and J. A. Holman, “Covid-19 Lockdown Affects Hearing 

Disability and Handicap in Diverse Ways: A Rapid Online Survey Study,” Ear & Hearing 41, no. 6, (July 23, 

2020): 1442.

504 L. A. Schifter, et al., “Students from Low-Income Families and Special Education,” The Century Foundation, 

January 17, 2019, https://tcf.org/content/report/students-low-income-families-special-education/;Legislative

Analyst’s Office (LAO), “Overview of Special Education in California,” November 6, 2019, 2, https://lao.ca.gov

/reports/2019/4110/overview-spec-ed-110619.pdf.

505 Tulsa SEED Study, “Parents, Teachers, and Distance Learning During the COVID-19 Pandemic A Snapshot 

from Tulsa, OK,” 2–4, August 2020, https://static1.squarespace.com/static/5ec6d9f9144482661ecd735a/t/5f3

e7f8d5bbd1934e03165f8/1597931409407/Tulsa+SEED+Study_COVID-19+Survey+Findings_FINAL1.pdf; USC 

Rossier School of Education and USC Annenberg School for Communication and Journalism (USC Schools), 

“When School Comes Home: How Low-income Families Are Adapting to Distance Learning,” October 2020, 8, 

https://rossier.usc.edu/wp-content/uploads/2020/10/USC-Report-When-School-Comes-Home-Aguilar

.pdf.

506 Id.

507 See J. Marshall, et al., “Those Who Switched to Telework Have Higher Income, Education and Better Health,” 

United States Census Bureau, March 31, 2021, https://www.census.gov/library/stories/2021/03/working-from

-home-during-the-pandemic.html.

508 Tulsa SEED Study, “Parents, Teachers, and Distance Learning During the COVID-19 Pandemic A Snapshot 

from Tulsa, OK,” 8, August 2020, https://static1.squarespace.com/static/5ec6d9f9144482661ecd735a/t/5f3e

7f8d5bbd1934e03165f8/1597931409407/Tulsa+SEED+Study_COVID-19+Survey+Findings_FINAL1.pdf; USC 

Rossier School of Education and USC Annenberg School for Communication and Journalism (USC Schools), 

“When School Comes Home: How Low-income Families Are Adapting to Distance Learning,” October 2020, 

9–11, https://rossier.usc.edu/wp-content/uploads/2020/10/USC-Report-When-School-Comes-Home-Aguilar.pdf.

509 Tulsa SEED Study, “Parents, Teachers, and Distance Learning During the COVID-19 Pandemic A Snapshot 

from Tulsa, OK,” 8, August 2020, https://static1.squarespace.com/static/5ec6d9f9144482661ecd735a/t/5f3e7f8

d5bbd1934e03165f8/1597931409407/Tulsa+SEED+Study_COVID-19+Survey+Findings_FINAL1.pdf.

510 Id. 8.

511 Id. 4.

512 See R. Lake and A. Makori, “Education Equity in Crisis: The Digital Divide,” The Education Trust-West, April 7, 

2020, https://west.edtrust.org/resource/education-equity-in-crisis-the-digital-divide/; S. Scott and K. Aquino, 

“COVID-19 Transitions: An Update on Access, Barriers, and Supports Nine Months into the Pandemic,” 

Association on Higher Education And Disability, 2020, https://higherlogicdownload.s3.amazonaws.com

/AHEAD/38b602f4-ec53-451c-9be0-5c0bf5d27c0a/UploadedImages/COVID-19_/AHEAD_COVID_Report

_wave_2_final.pd; P. Esquivel and H. Blume, “Tens of Thousands of L.A.-area Students Still Need Computers 

or Wi-Fi 6 Months into Pandemic,” Los Angeles Times, September 15, 2020, https://www.latimes.com

/california/story/2020-09-15/tens-of-thousands-of-la-county-students-still-need-computers-and-hot-spots-six

-months-into-school-closures; see also U.S. Government Accountability Office, “Distance Learning: Challenges 

Providing Services to K-12 English Learners and Students with Disabilities During COVID-19,” November 2020, 

9–10, (discussing English language learners), https://www.gao.gov/assets/720/710779.pdf.

513 B. Vázquez Toness, “Your Child’s a No-Show at Virtual School? You May Get a Call from the State’s Foster Care 

Agency,” The Boston Globe, August 15, 2020, https://www.bostonglobe.com/2020/08/15/metro/your-childs-no

-show-virtual-school-you-may-get-call-states-foster-care-agency/; M. Keierleber, “How Missing Zoom Classes 

Could Funnel Kids into the Juvenile Justice System—And Why Some Experts Say Now is the Time to Reform 

Truancy Rules,” The 74, https://www.the74million.org/article/how-missing-zoom-classes-could-funnel-kids-into

-the-juvenile-justice-system-and-why-some-experts-say-now-is-the-time-to-reform-truancy-rules/.

514 C. Binkley, “Remote Learning Poses Hurdles for Students with Disabilities,” ABC News, March 31, 2020, 

https://abcnews.go.com/Health/wireStory/parents-feel-virus-shutdowns-leave-disabled-students-69890939.

236 National Council on Disability
515 J. S. Cohen, “A Teenager Didn’t Do Her Online Schoolwork. So a Judge Sent Her to Juvenile Detention.” 

ProPublica Illinois, July 14, 2020, https://www.propublica.org/article/a-teenager-didnt-do-her-online-school

work-so-a-judge-sent-her-to-juvenile-detention; J. S. Cohen, “Grace, Black Teen Jailed for Not Doing Her 

Online Coursework, Is Released,” ProPublica Illinois, July 31, 2020, https://www.propublica.org/article

/grace-black-teen-jailed-for-not-doing-her-online-coursework-is-released.

516 S. Scott and K. Aquino, “COVID-19 Transitions: An Update on Access, Barriers, and Supports Nine Months 

into the Pandemic,” Association on Higher Education And Disability, 2020, https://higherlogicdownload

.s3.amazonaws.com/AHEAD/38b602f4-ec53-451c-9be0-5c0bf5d27c0a/UploadedImages/COVID-19_/AHEAD

_COVID_Report_wave_2_final.pdf; P. Esquivel and H. Blume, “Tens of Thousands of L.A.-area Students Still 

Need Computers or Wi-Fi 6 Months into Pandemic,” Los Angeles Times, September 15, 2020, https://

www.latimes.com/california/story/2020-09-15/tens-of-thousands-of-la-county-students-still-need-computers

-and-hot-spots-six-months-into-school-closures.

517 E. Richards, et al., “A Year into the Pandemic, Thousands of Students Still Can’t Get Reliable WiFi for School. 

The Digital Divide Remains Worse Than Ever.” USA Today, February 4, 2021, https://www.usatoday.com/story

/news/education/2021/02/04/covid-online-school-broadband-internet-laptops/3930744001/; S. Johnson and 

M. Burke, “More California Students Are Online, But Digital Divide Runs Deep with Distance Learning, 

Ed Source, May 1, 2020, https://edsource.org/2020/more-california-students-are-online-but-digital-divide-runs

-deep-with-distance-learning/630456.

518 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” November 2020, https://www.gao.gov/assets

/720/710779.pdf.

519 J. Napolitano, “Federal Probes Into Lack of School Services for Special Needs Students Reflect Nearly 

A Year of Parental Anguish, Advocates Say,” LA School Report, Feb. 11, 2021, http://laschoolreport.com

/federal-probes-into-lack-of-school-services-for-special-needs-students-reflect-nearly-a-year-of-parental

-anguish-advocates-say/; Disability Rights California, “Special Education During COVID-19: Stories from Across 

California,” December 12, 2020, https://www.disabilityrightsca.org/post/special-education-during-covid-19

-stories-from-across-california; H. Blume, “L.A. Teachers Union Opposes Opening Campuses For Students 

With Disabilities, English Learners,” Los Angeles Times, September 5, 2020, https://www.latimes.com

/california/story/2020-09-05/l-a-teachers-union-opposes-small-groups-of-students-on-campus.”

520 Disability Rights California, “Special Education During COVID-19: Stories from Across California,” 

December 12, 2020, https://www.disabilityrightsca.org/post/special-education-during-covid-19-stories-from

-across-california

521 M. Will, “Most Educators Require Kids to Turn Cameras On in Virtual Class, Despite Equity Concerns,” 

Education Week, October 20, 2020, https://www.edweek.org/teaching-learning/most-educators-require

-kids-to-turn-cameras-on-in-virtual-class-despite-equity-concerns/2020/10.

522 M. Sampathkumar and M. Shwayder, “The Mass Migration to Online Learning Is Leaving Disabled Students 

Behind,” digitaltrends, March 27, 2020, https://www.digitaltrends.com/news/disabled-students-online

-learning-coronavirus/.

523 G. Anderson, “Accessibility Suffers During Pandemic,” Inside Higher Education, Apr. 6, 2020, https://www

.insidehighered.com/news/2020/04/06/remote-learning-shift-leaves-students-disabilities-behin

524 J. Madaus, et al., “Using the APP Tool to Promote Student Self-Determination Skills in Higher Education 

(Practice Brief),” Journal of Postsecondary Education and Disability, Volume 33, no. 3, (Fall 2020), https://

higherlogicdownload.s3.amazonaws.com/AHEAD/38b602f4-ec53-451c-9be0-5c0bf5d27c0a/UploadedImages

/JPED/JPED_Vol_33/33_issue_3/JPED_33_3__02.pdf.

525 National Deaf Center on Postsecondary Outcomes, “Auto Captions and Deaf Students: Why Automatic 

Speech Recognition Technology Is Not the Answer (Yet),” October 27, 2020, https://www.nationaldeafcenter

.org/news/auto-captions-and-deaf-students-why-automatic-speech-recognition-technology-not-answer-yet.

526 Id.

The Impact of COVID-19 on People with Disabilities 237
527 S. Lekach, “Zoom Catches Up with New Accessibility Features for Sign Language Interpretation,” Mashable, 

September 23, 2020, https://mashable.com/article/zoom-video-accessibility-features/.

528 American Speech-Language Hearing Association, “Tips for Helping Students With Hearing Loss in Virtual and 

In-Person Learning Settings,” https://www.asha.org/aud/Tips-for-Helping-Students-With-Hearing-Loss-in

-Virtual-and-In-Person-Learning-Settings/.

529 U.S. Government Accountability Office, “Distance Learning: Challenges Providing Services to K-12 English 

Learners and Students with Disabilities During COVID-19,” 14–15, November 2020, https://www.gao.gov

/assets/720/710779.pdf.

530 J. Napolitano, “Federal Probes Into Lack of School Services for Special Needs Students Reflect Nearly 

A Year of Parental Anguish, Advocates Say,” LA School Report, February 11, 2021, http://laschoolreport.com

/federal-probes-into-lack-of-school-services-for-special-needs-students-reflect-nearly-a-year-of-parental

-anguish-advocates-say/; Disability Rights California, “Special Education During COVID-19: Stories from Across 

California,” December 12, 2020, https://www.disabilityrightsca.org/post/special-education-during-covid-19

-stories-from-across-california;” H. Blume, “L.A. Teachers Union Opposes Opening Campuses For Students 

With Disabilities, English Learners,” Los Angeles Times, September 5, 2020, https://www.latimes.com

/california/story/2020-09-05/l-a-teachers-union-opposes-small-groups-of-students-on-campus; K. A. Graham, 

“The Same Four Walls,” Philadelphia Inquirer, May 2, 2021, https://www.inquirer.com/education/a/pandemic

-learning-loss-philadelphia-school-family-20210502.html.

531 S. Kohlistaff, “Children with Disabilities Are Regressing. How Much Is Distance Learning to Blame?” Los 

Angeles Times, August 7, 2020, https://www.latimes.com/california/story/2020-08-07/covid-19-distance

-learning-weakens-special-education; Center for Translational Neuroscience, “Overloaded: Families With 

Children Who Have Special Needs Are Bearing an Especially Heavy Weight, And Support Is Needed,” 

December 17, 2020, https://medium.com/rapid-ec-project/overloaded-families-with-children-who-have

-special-needs-are-bearing-an-especially-heavy-weight-4e613a7681bd; K. A. Graham, “The Same Four Walls,” 

Philadelphia Inquirer, May 2, 2021, https://www.inquirer.com/education/a/pandemic-learning-loss-philadelphia

-school-family-20210502.html; J. Napolitano, “Federal Probes Into Lack of School Services for Special Needs 

Students Reflect Nearly A Year of Parental Anguish, Advocates Say,” LA School Report, February 11, 2021, 

http://laschoolreport.com/federal-probes-into-lack-of-school-services-for-special-needs-students-reflect

-nearly-a-year-of-parental-anguish-advocates-say/; Disability Rights California, “Special Education During 

COVID-19: Stories from Across California,” December 12, 2020, https://www.disabilityrightsca.org/post

/special-education-during-covid-19-stories-from-across-california.

532 C. Turner, et al., “‘I’ve Tried Everything’: Pandemic Worsens Child Mental Health Crisis,” National Public Radio, 

January 18, 2021, https://www.npr.org/sections/health-shots/2021/01/18/953581851/ive-tried-everything

-pandemic-has-cut-options-for-kids-with-mental-illness; Centers for Medicare & Medicaid Services, “Fact 

Sheet: Service Use among Medicaid & CHIP Beneficiaries Age 18 and Under during COVID-19,” September 23, 

2020, https://www.cms.gov/newsroom/fact-sheets/fact-sheet-service-use-among-medicaid-chip-beneficiaries

-age-18-and-under-during-covid-19.

533 See N. Racine, et al., “Telemental Health for Child Trauma Treatment During and Post-COVID-19: Limitations 

and Considerations,” Child Abuse Negl., August 19, 2020, https://www.ncbi.nlm.nih.gov/pmc/articles

/PMC7437482/.

534 Center for Translational Neuroscience, “Overloaded: Families With Children Who Have Special Needs Are 

Bearing an Especially Heavy Weight, And Support Is Needed,” December 17, 2020, https://medium.com/rapid

-ec-project/overloaded-families-with-children-who-have-special-needs-are-bearing-an-especially-heavy-weight

-4e613a7681bd.

535 C. Turner, et al., “‘I’ve Tried Everything’: Pandemic Worsens Child Mental Health Crisis,” National Public Radio, 

January 18, 2021, https://www.npr.org/sections/health-shots/2021/01/18/953581851/ive-tried-everything

-pandemic-has-cut-options-for-kids-with-mental-illness.

238 National Council on Disability
536 K. A. Graham, “The Same Four Walls,” Philadelphia Inquirer, May 2, 2021, https://www.inquirer.com/education

/a/pandemic-learning-loss-philadelphia-school-family-20210502.html.

537 Id.

538 Id.

539 Id.

540 J. Napolitano, “Federal Probes Into Lack of School Services for Special Needs Students Reflect Nearly A Year 

of Parental Anguish, Advocates Say,” LA School Report, February 11, 2021, http://laschoolreport.com

/federal-probes-into-lack-of-school-services-for-special-needs-students-reflect-nearly-a-year-of-parental-anguish

-advocates-say/.

541 S. Kohlistaff, “Children with Disabilities Are Regressing. How Much Is Distance Learning to Blame?” 

Los Angeles Times, August 7, 2020, https://www.latimes.com/california/story/2020-08-07/covid-19-distance

-learning-weakens-special-education.

542 Testimony of Reade Bush, Parent from Arlington, Virginia, US House of Representatives, Early Childhood, 

Elementary, and Secondary Education Subcommittee Hearing, “Addressing the Impact of COVID-19 on Students 

with Disabilities,” May 6, 2021, https://edlabor.house.gov/imo/media/doc/BushReadeTestimony050621.pdf.

543 U.S. Government Accountability Office, “Indian Education: Schools Need More Assistance to Provide 

Distance Learning,” April 28, 2021, 13–16, 1https://www.gao.gov/assets/gao-21-492t.pdf.

544 Id.; C. Running Bear, et al., “Challenges for Rural Native American Students with Disabilities During COVID-19,” 

Rural Special Education Quarterly, 2, 2021, https://journals.sagepub.com/doi/pdf/10.1177/8756870520982294.

545 U.S. Government Accountability Office, “Indian Education: Schools Need More Assistance to Provide 

Distance Learning,” April 28, 2021, 16–23, 1https://www.gao.gov/assets/gao-21-492t.pdf.

546 C. Running Bear, et al., “Challenges for Rural Native American Students with Disabilities During COVID-19,” 5, 

Rural Special Education Quarterly, 2, 2021, https://journals.sagepub.com/doi/pdf/10.1177/8756870520982294.

547 Id. 3.

548 U.S. Government Accountability Office, “Indian Education: Schools Need More Assistance to Provide 

Distance Learning,” April 28, 2021, 9 & fig. 4, 1https://www.gao.gov/assets/gao-21-492t.pdf.

549 C. Running Bear, et al., “Challenges for Rural Native American Students with Disabilities During COVID-19,” 3, 

Rural Special Education Quarterly, 2, 2021, https://journals.sagepub.com/doi/pdf/10.1177/8756870520982294.

550 Id. at 3, 5.

551 Id. at 2–3.

552 S. Johnson and M. Burke, “More California Students Are Online, But Digital Divide Runs Deep with Distance 

Learning, Ed Source, May 1, 2020, https://edsource.org/2020/more-california-students-are-online-but-digital

-divide-runs-deep-with-distance-learning/630456.

553 C. Running Bear, et al., “Challenges for Rural Native American Students with Disabilities During COVID-19,” 

5–7, Rural Special Education Quarterly, 2, 2021, https://journals.sagepub.com/doi/pdf/10.1177/875687

0520982294.

554 U.S. Government Accountability Office, “Indian Education: Actions Needed to Ensure Students with 

Disabilities Receive Special Education Services,” May 2020, https://www.gao.gov/assets/gao-20-358.pdf.

555 Id.

556 Id.

557 Id.

Chapter Five: Employment and COVID-19

558 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 10–11, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

559 Id. at 11–12.

The Impact of COVID-19 on People with Disabilities 239
560 U.S. Census Bureau, “Income and Poverty in the United States: 2019,” September 2020, 13 fig. 8, https://

www.census.gov/content/dam/Census/library/publications/2020/demo/p60-270.pdf.

561 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 22, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.; U.S. 

Bureau of Labor Statistics, “Persons with A Disability: Labor Force Characteristics—2019,” February 26, 2020, 

Table 1 (participation rate), https://web.archive.org/web/20200226215040/https://www.bls.gov/news.release

/pdf/disabl.pdf.

562 U.S. Bureau of Labor Statistics, “Persons with A Disability: Labor Force Characteristics—2019,” February 26, 

2020, 2 (participation rate), https://web.archive.org/web/20200226215040/https://www.bls.gov/news.release/

pdf/disabl.pdf.

563 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 22–24, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

564 See U.S. Senator Bob Casey, “Disability Employment Incentive Act, https://www.aging.senate.gov/imo/media

/doc/Disability%20Employment%20Incentive%20Act%20one%20pager.pdf.

565 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 33–34, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

566 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 59–60, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

567 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 57–60, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

568 Center on Budget and Policy Priorities, “Policy Basics: Supplemental Security Income,” updated February 8, 

2021, https://www.cbpp.org/research/social-security/supplemental-security-income.

569 U.S. Bureau of Labor Statistics, “Persons with a Disability: Labor Force Characteristics—2020.” News Release 

February 24, 2020, https://www.bls.gov/news.release/pdf/disabl.pdf.

570 Id.

571 Id.

572 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 21–23, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

573 Id. at 25.

574 Id. at 35–36. University of New Hampshire, Institute on Disability, “Annual Report on People with Disabilities 

in America,” 2020, 7, https://disabilitycompendium.org/.

575 University of New Hampshire, Institute on Disability, “Annual Report on People with Disabilities in America,” 

2020, 9, https://disabilitycompendium.org/.; see also National Council on Disability, 2020 Progress Report on 

National Disability Policy, Increasing Disability Employment (July 24, 2020), 36, https://ncd.gov/sites/default

/files/NCD_Progress_Report_508_0.pdf.

576 U.S. Bureau of Labor Statistics, “Persons with A Disability: Labor Force Characteristics—2019,” February 26, 

2020, Table 1 (participation rate), https://web.archive.org/web/20200226215040/https://www.bls.gov/news

.release/pdf/disabl.pdf.

577 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 36, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

578 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 29–30, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.; 

National Council on Disability, “Policies from the Past in a Modern Era: The Unintended Consequences of 

the AbilityOne Program & Section 14(c),” October 14, 2020, 25–26, https://ncd.gov/sites/default/files/NCD

_AbilityOne_508.pdf.

579 Kessler Foundation and University of New Hampshire, Institute on Disability, “nTIDE April 2020 Jobs Report: 

COVID Recession Hits Workers with Disabilities Harder,” May 8, 2020, https://researchondisability.org/home

240 National Council on Disability
/ntide/ntide-news-item/2020/05/08/ntide-april-2020-jobs-report-covid-recession-hits-workers-with-disabilities

-harder; G. Livermore and J. Schimmel Hyde, “Workers with Disabilities Face Unique Challenges in Weathering 

the COVID-19 Pandemic,” Mathematica, May 28, 2020, https://www.mathematica.org/commentary/workers

-with-disabilities-face-unique-challenges-in-weathering-the-covid-19-pandemic.

580 U.S. Government Accountability Office (GAO), “Distance Learning: Challenges Providing Services to K-12 

English Learners and Students with Disabilities During COVID-19,” November 2020, 14–16, https://www.gao

.gov/assets/720/710779.pdf.

581 D. A. Rowe, et al., “Supporting Strong Transitions Remotely: Considerations and Complexities for Rural 

Communities During COVID-19,” Rural Special Education Quarterly, vol. 39 (2020): 222, https://journals

.sagepub.com/doi/pdf/10.1177/8756870520958199; S. Tuchman and L. McKittrick, “Federal Special Education 

Guidance is Clear”; Center on Reinventing Public Education, “Now States Must Step Up,” May 5, 2020, 

https://www.crpe.org/thelens/federal-special-education-guidance-clear-now-states-must-step.

582 U.S. Department of Education, “RSA Q&A Concerning the Administration of the State Vocational 

Rehabilitation (VR) Services, American Indian Vocational Rehabilitation Services (AIVRS), and RandolphSheppard Programs to Provide Continuity of Operations for Individuals with Disabilities in the Current 

COVID-19 Environment,” May 14, 2020, question 7, https://www2.ed.gov/policy/speced/guid/rsa/supporting

/rsa-faq-vr-aivrs-rs-programs-covid-19-05-14-2020.pdf.

583 See Id., questions 2, 7.

584 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 57–60, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf.

585 S. D. Wire, “Taxpayers Don’t Know How Many Jobs PPP Loans Saved during the Pandemic. No One Counted,” 

Los Angeles Times, April 1, 2021, https://www.latimes.com/politics/story/2021-04-01/taxpayers-may-never

-know-how-many-jobs-the-1-trillion-ppp-saved-the-government-didnt-keep-count.

586 U.S. Dep’t of Labor, “Unemployment Insurance Program Letter No. 16-20, Change 5,” February 25, 2021, 

9–10, https://web.archive.org/web/20210321213652/https://wdr.doleta.gov/directives/attach/UIPL/UIPL_16

-20_Change_5.pdf; U.S. Dep’t of Labor, Unemployment Insurance Program Letter No. 16-20, April 5, 2020, 

3, https://web.archive.org/web/20200501002610/https://wdr.doleta.gov/directives/attach/UIPL/UIPL_16-20

.pdf.

587 Centers for Disease Control and Prevention, “People with Certain Medical Conditions,” March 29, 2021, 

https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html; 

Centers for Disease Control and Prevention, “People with Disabilities,” updated March 16, 2021, https://www

.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-disabilities.html.

588 University of New Hampshire, Institute on Disability, “Annual Report,” 2019, 13–14 & Table 6 and Figure 6, 

https://files.eric.ed.gov/fulltext/ED605685.pdf.

589 U.S. Bureau of Labor Statistics, “Persons with A Disability: Labor Force Characteristics—2019,” February 26, 

2020, 2, https://web.archive.org/web/20200226215040/https://www.bls.gov/news.release/pdf/disabl.pdf.

590 See, e.g., E. Hoeven, “California’s Jobless Claims Site Crashes as Backlog Grows,” CALMatters, March 23, 

2021, https://calmatters.org/newsletters/whatmatters/2021/03/edd-crashes-blocking-claim-certification/; 

E. Rosenberg, “Delays in Aid Continue for Unemployed Workers One Year into the Pandemic,” Washington 

Post, March 22, 2021, https://www.washingtonpost.com/business/2021/03/22/unemployment-insurance

-delays-stimulus/; P. McGreevy, “A Year into Pandemic, California’s Broken Unemployment Agency Still Hurting 

Those In Need,” Los Angeles Times, January 29, 2021, https://www.latimes.com/california/story/2021-01-29

/california-unemployment-agency-unprepared-covid-19-backlog-fraud-struggles; A. Akhtar and N. Lichtenberg, 

“A State-byState Breakdown of Failures in Unemployment Systems across the US During the pandemic,” 

Business Insider, September 9, 2020, https://www.businessinsider.com/how-states-unemployment-insurance

-programs-ended-in-disaster-2020-9; C. Reinicke, “‘My Savings Ran Out a Month into This’: Workers Laid Off 

Because Of Coronavirus are Waiting Months to Get Unemployment Benefits, Even as the Economy Reopens,” 

The Impact of COVID-19 on People with Disabilities 241
Business Insider, July 18, 2020, https://www.businessinsider.com/unemployment-benefits-workers-receiving

-delays-economy-reopens-2020-6.

591 B. Zipperer and E. Gould, “Unemployment Filing Failures: New Survey Confirms That Millions of Jobless Were 

Unable to File an Unemployment Insurance Claim,” April 28, 2020, Economic Policy Institute, https://www

.epi.org/blog/unemployment-filing-failures-new-survey-confirms-that-millions-of-jobless-were-unable-to-file-an

-unemployment-insurance-claim/.

592 See C. LaCheen, “Using Title II of the Americans with Disabilities Act on Behalf of Clients in TANF Programs,” 

Georgetown Journal of Poverty Law & Policy, vol. 8, 2001, 9, 104–105, 152–157 (describing barriers 

experienced by TANF applicants and beneficiaries who have disabilities in applying for and maintaining 

benefits).

593 U.S. Department of Labor, Bureau of Labor Statistics, “Ability to Work from Home: Evidence from Two 

Surveys and Implications for the Labor Market in the COVID-19 Pandemic,” June 2020, https://www.bls.gov

/opub/mlr/2020/article/ability-to-work-from-home.htm; A. W. Bartik, et al., “What Jobs Are Being Done 

at Home During the Covid-19 Crisis? Evidence From Firm-Level Surveys,” National Bureau of Economic 

Research, June 2020, https://www.nber.org/system/files/working_papers/w27422/w27422.pdf.

594 J. M. Jones, “U.S. Remote Workdays Have Doubled During Pandemic,” Gallup, August 31, 2020, https://

news.gallup.com/poll/318173/remote-workdays-doubled-during-pandemic.aspx; K. Guyot and I. V. Sawhill, 

“Telecommuting Will Likely Continue Long After the Pandemic,” Brookings Institute, April 6, 2020, 

https://www.brookings.edu/blog/up-front/2020/04/06/telecommuting-will-likely-continue-long-after-the

-pandemic/.

595 Bureau of Labor Statistics, “One-Quarter of the Employed Teleworked in August 2020 Because of COVID-19 

Pandemic,” September 15, 2020 (with chart showing percent of employed people 25 years and older 

who teleworked at some point in the last four weeks because of the COVID-19 pandemic by educational 

attainment: “Among employed people age 25 and older in August, only 3 percent of those with a high school 

diploma teleworked, compared with 44 percent of those with a bachelor’s degree or higher.”), https://www

.bls.gov/opub/ted/2020/one-quarter-of-the-employed-teleworked-in-august-2020-because-of-covid-19

-pandemic.htm.

596 J. Marshall, et al., “Those Who Switched to Telework Have Higher Income, Education and Better Health,” 

United States Census Bureau, March 31, 2021, https://www.census.gov/library/stories/2021/03/working-from

-home-during-the-pandemic.html.

597 National Council on Disability, 2020 Progress Report on National Disability Policy, Increasing Disability 

Employment (July 24, 2020), 35–36, https://ncd.gov/sites/default/files/NCD_Progress_Report_508_0.pdf

.University of New Hampshire, Institute on Disability, “Annual Report on People with Disabilities in America,” 

2020, 7, https://disabilitycompendium.org/.

598 University of New Hampshire, Institute on Disability, “Annual Report on People with Disabilities in America,” 

2020, 9, https://disabilitycompendium.org/.; National Council on Disability, 2020 Progress Report on National 

Disability Policy, Increasing Disability Employment (July 24, 2020), 36, https://ncd.gov/sites/default/files

/NCD_Progress_Report_508_0.pdf.; Bureau of Labor Statistics, “People With a Disability Less Likely to Have 

Completed a Bachelor’s Degree” July 20, 2015, https://www.bls.gov/opub/ted/2015/people-with-a-disability

-less-likely-to-have-completed-a-bachelors-degree.htm.

599 See L. A. Schur, et al., “Telework After COVID: A ‘Silver Lining’ for Workers with Disabilities?” Journal of 

Occupational Rehabilitation, vol. 30, November 6, 2020, https://link.springer.com/article/10.1007/s10926

-020-09936-5; National Council on Disability, “The Power of Digital Inclusion: Technology’s Impact on Employment 

and Opportunities for People with Disabilities,” October 4, 2011, https://ncd.gov/publications/2011/Oct042011; 

B. L. Wagstaff and J. Quasius, “The ADA, Telework, and the Post-Pandemic Workplace,” The Regulatory 

Review, September 7, 2020, https://www.theregreview.org/2020/09/07/wagstaff-quasius-ada-telework-post

-pandemic-workplace/.

242 National Council on Disability
600 B. Silverstein and E. Gurney, “Disability-Inclusive Telework for States: State Approaches to Increasing 

Access & Inclusion,” The Council of State Governments, 2020, 14, https://seed.csg.org/wp-content

/uploads/2020/12/2020_SEED_Telework_RGB_Web.pdf.

601 K. Parker, et al., “How the Coronavirus Outbreak Has—and Hasn’t—Changed the Way Americans Work,” 

Pew Research Center, December 9, 2020, https://www.pewresearch.org/social-trends/2020/12/09

/how-the-coronavirus-outbreak-has-and-hasnt-changed-the-way-americans-work/; Nicole Ogrysko, “New 

Normal Or ‘Same Old Bureaucracy?’ Feds Offer Mixed Views on Telework Prospects Beyond Pandemic,” 

Federal News Network, January 6, 2021, https://federalnewsnetwork.com/workforce/2021/01/new-normal

-or-same-old-bureaucracy-feds-offer-mixed-views-on-telework-prospects-beyond-pandemic/.

602 K. Parker, et al., “How the Coronavirus Outbreak Has—and Hasn’t—Changed the Way Americans Work,” 

Pew Research Center, December 9, 2020, https://www.pewresearch.org/social-trends/2020/12/09/how-thecoronavirus-outbreak-has-and-hasnt-changed-the-way-americans-work/; Nicole Ogrysko, “New Normal 

Or ‘Same Old Bureaucracy?’ Feds Offer Mixed Views on Telework Prospects Beyond Pandemic,” Federal News 

Network, January 6, 2021, https://federalnewsnetwork.com/workforce/2021/01/new-normal-or-same-old

-bureaucracy-feds-offer-mixed-views-on-telework-prospects-beyond-pandemic/.

603 See Centers for Disease Control and Prevention, “Prevalence of Disability and Disability Types by Urban-Rural 

County Classification—United States, 2016,” last reviewed September 16, 2020, https://www.cdc.gov/ncbddd

/disabilityandhealth/features/disability-prevalence-rural-urban.html.

604 Research and Training Center on Disability in Rural Communities, “Disability and Employment—Disability in 

America Series,” September 2016, http://rtc.ruralinstitute.umt.edu/research-findings/geography/disability

-and-employment/.

605 L. A. Schur, et al., “Telework After COVID: A ‘Silver Lining’ for Workers with Disabilities?” Journal of Occupational 

Rehabilitation, vol. 30, November 6, 2020, https://link.springer.com/article/10.1007/s10926-020-09936-5; 

K. Guyot and I. V. Sawhill, “Telecommuting Will Likely Continue Long After the Pandemic,” Brookings Institute, 

April 6, 2020, https://www.brookings.edu/blog/up-front/2020/04/06/telecommuting-will-likely-continue-long

-after-the-pandemic/.

606 M. Anderson and A. Perrin, “Disabled Americans Are Less Likely to Use Technology,” Pew Research Center, 

April 7, 2017, https://www.pewresearch.org/fact-tank/2017/04/07/disabled-americans-are-less-likely-to-use

-technology/.

607 Id.

608 Office of Disability Employment Policy, “Employment for Persons with a Disability,” 11, fig. 8 (reviewing loss 

of employment from February to November 2020 by people with and without disabilities by availability 

of telework), November 2020, 13, fig. 9 (reviewing loss of employment by extent of physical proximity 

or contact intensity), https://www.dol.gov/sites/dolgov/files/OASP/evaluation/pdf/ODEP_Employment-for-PWD

-AnalysisofTrendsDuringCOVID_Feb-Sept.pdf.

609 K. Filanoski, “nTIDE July 2020 Jobs Report: July Numbers Raise Red Flag for Americans with Disabilities,” 

Kessler Foundation and University of New Hampshire Institute on Disability, January 8, 2021, https://

researchondisability.org/rod-news/2020/08/18/ntide-july-2020-jobs-report-july-numbers-raise-red-flag-for

-americans-with-disabilities#:~:text=In%20the%20Bureau%20of%20Labor,percent%20or%200.3%20

percentage%20points.

610 A. Chiu, “The Pandemic Is a Headache—and for Some people, It’s Causing Migraine,” Washington Post, 

December 21, 2020, https://www.washingtonpost.com/lifestyle/wellness/headache-migraine-screen-help

-covid/2020/12/18/a3828266-3f33-11eb-8bc0-ae155bee4aff_story.html.

611 See Disability: IN, “COVID-19 Response: Digital Accessibility and Other Best Practices for Remote Work,” 

https://disabilityin.org/resources2/covid-19-response-accessible-tools-and-content/.

612 Equal Employment Opportunity Commission, “Annual Report on the Federal Workforce,” 2018, 28. https://

www.eeoc.gov/sites/default/files/2021-06/2018%20Federal%20Sector%20Report.pdf.

The Impact of COVID-19 on People with Disabilities 243
613 Id. at 23–24. A list of targeted disabilities is found on federal form SF-256 “Self-Identification of Disability” at 

https://www.opm.gov/forms/standard-forms/.

614 O. Ogrysko, “New Normal or ‘Same Old Bureaucracy?’ Feds Offer Mixed Views on Telework Prospects Beyond 

Pandemic,” Federal News Network, January 6, 2021, https://federalnewsnetwork.com/workforce/2021/01

/new-normal-or-same-old-bureaucracy-feds-offer-mixed-views-on-telework-prospects-beyond-pandemic/.

615 Id.

616 U.S. Office of Personnel Management and General Services Administration (OPM), “M-21-25: Memorandum 

for the Heads of Executive Departments and Agencies,” June 10, 2021, https://www.whitehouse.gov/wp

-content/uploads/2021/06/M-21-25.pdf; N. Ogrysko, “OPM Readying New Guidance to Help Agencies Plan for 

Post-Pandemic Telework Changes,” Federal News Network, March 24, 2021, https://federalnewsnetwork.com

/workforce/2021/03/opm-readying-new-guidance-to-help-agencies-plan-for-post-pandemic-telework-changes/.

617 U.S. Office of Personnel Management and General Services Administration (OPM), “M-21-25: Memorandum 

for the Heads of Executive Departments and Agencies,” 3, June 10, 2021, https://www.whitehouse.gov/wp

-content/uploads/2021/06/M-21-25.pdf.

618 Id. at 6–7.

619 Id. at 13, 15.

620 Id. at 14.

621 National Conference of State Legislatures, “The Promise of Telework,” February 8, 2021, https://www.ncsl

.org/research/labor-and-employment/the-promise-of-telework637471656.aspx.

622 U.S. Department of Labor, Bureau of Labor Statistics, “Ability to Work from Home: Evidence from Two 

Surveys and Implications for the Labor Market in the COVID-19 Pandemic,” June 2020, https://www.bls

.gov/opub/mlr/2020/article/ability-to-work-from-home.htm; A. W. Bartik, et al., “What Jobs Are Being Done 

at Home During the Covid-19 Crisis? Evidence From Firm-Level Surveys,” National Bureau of Economic 

Research, June 2020, https://www.nber.org/system/files/working_papers/w27422/w27422.pdf; J. M. Jones, 

“U.S. Remote Workdays Have Doubled During Pandemic,” Gallup, August 31, 2020, https://news.gallup

.com/poll/318173/remote-workdays-doubled-during-pandemic.aspx; see also U.S. Equal Employment 

Opportunity Commission, “Pandemic Preparedness in the Workplace and the Americans with Disabilities Act,” 

EEOC updated March 21, 2020, question 10 (“[E]mployees with disabilities that put them at high risk for 

complications of pandemic influenza may request telework as a reasonable accommodation to reduce their 

chances of infection during a pandemic.”), https://www.eeoc.gov/laws/guidance/pandemic-preparedness

-workplace-and-americans-disabilities-act.

623 L. A. Schur, et al., “Telework After COVID: A ‘Silver Lining’ for Workers with Disabilities?” Journal of 

Occupational Rehabilitation, vol. 30, November 6, 2020, https://link.springer.com/article/10.1007/s10926

-020-09936-5; J. M. Jones, “U.S. Remote Workdays Have Doubled During Pandemic,” Gallup, August 31, 

2020, https://news.gallup.com/poll/318173/remote-workdays-doubled-during-pandemic.aspx; K. Guyot and 

I. V. Sawhill, “Telecommuting Will Likely Continue Long After the Pandemic,” Brookings Institute, April 6, 

2020, https://www.brookings.edu/blog/up-front/2020/04/06/telecommuting-will-likely-continue-long

-after-the-pandemic/.

624 National Conference on State Legislatures, “The Promise of Telework.”

625 L. A. Schur, et al., “Telework After COVID: A ‘Silver Lining’ for Workers with Disabilities?” Journal of 

Occupational Rehabilitation, vol. 30, November 6, 2020, https://link.springer.com/article/10.1007

/s10926-020-09936-5”; K. Guyot and I. V. Sawhill, “Telecommuting Will Likely Continue Long After the 

Pandemic,” Brookings Institute, April 6, 2020, https://www.brookings.edu/blog/up-front/2020/04/06

/telecommuting-will-likely-continue-long-after-the-pandemic/.

626 U.S. Equal Employment Opportunity Commission (EEOC), “Work at Home/Telework as a Reasonable 

Accommodation,” February 3, 2003 https://www.eeoc.gov/laws/guidance/work-hometelework-reasonable

-accommodation.

244 National Council on Disability
627 29 C.F.R. § 1630.2(o)(1)(ii), (iii).

628 Job Accommodation Network, “Accommodation and Compliance: Telework,” https://askjan.org/topics

/telework.cfm.

629 CDC, “People with Certain Medical Conditions,” updated May 13, 2021, https://www.cdc.gov/coronavirus

/2019-ncov/need-extra-precautions/people-with-medical-conditions.html.

630 Written testimony of Brian East, Disability Rights Texas, for the EEOC Public Hearing: The Civil Rights 

Implications of the COVID-19 Pandemic, April 28, 2021. https://www.eeoc.gov/meetings/meeting-april

-28-2021-workplace-civil-rights-implications-covid-19-pandemic/east.

631 Id.

632 Id.

633 Id.

634 Id.

635 M. Eloise, “We Still Need Accommodations,” The Cut, February 1, 2021, https://www.thecut.com/2021/02

/pandemic-work-disability-accommodations.html; Written Testimony of Fatima Goss Graves, President and 

CEO, National Women’s Law Center, Meeting of April 28, 2021 - Workplace Civil Rights Implications of the 

COVID-19 Pandemic, https://www.eeoc.gov/meetings/meeting-april-28-2021-workplace-civil-rights-implications

-covid-19-pandemic/graves.

636 U.S. Equal Employment Opportunity Commission, “Enforcement and Litigation Statistics” [through 2020], 

https://www.eeoc.gov/statistics/enforcement-and-litigation-statistics; The National Law Review, “EEOC 

Roundup, Part I: 10 Things to Know About the 2020 Charges and Litigation Statistics,” March 5, 2021, 

https://www.natlawreview.com/article/eeoc-roundup-part-i-10-things-to-know-about-2020-charges-and

-litigation-statistics.

637 Peeples v. Clinical Support Options, Inc., 487 F. Supp. 3d 56 (D. Mass. 2020).

638 Peeples v. Clinical Support Options, Inc., No. 3:20-cv-30144-KAR, ECF 26, Settlement Order of Dismissal, 

Dec. 15, 2020.

639 See “Legal Aid at Work, Hiring a Labor or Employment Lawyer,” https://legalaidatwork.org/factsheet/hiring

-a-labor-or-employment-lawyer/.

640 J. Bustos, “Judge Denies ACLU SC Request to Stop McMaster’s Return-to-Work order,” The State, April 9, 

2021, https://www.thestate.com/news/politics-government/article250563154.html; J. Call, “State workers 

in Tallahassee gripped by fear, confusion as telework options end,” USA Today, October 5, 2020, https://

www.tallahassee.com/story/news/politics/2020/10/05/state-workers-tallahassee-gripped-fear-confusion

-telework-options-end/3621852001/; B. Egbert, “Work from Home is Ending. The Office May Never Be the 

Same.” California News Times, May 5, 2021, https://californianewstimes.com/work-from-home-is-ending

-the-office-may-never-be-the-same/347508/#google_vignette.

641 U.S. Equal Employment Opportunity Commission, “What You Should Know About COVID-19 and the ADA, the 

Rehabilitation Act, and Other EEO Laws,” updated December 16, 2020, https://www.eeoc.gov/wysk/what

-you-should-know-about-covid-19-and-ada-rehabilitation-act-and-other-eeo-laws. “The fact that an employer 

temporarily excused performance of one or more essential functions when it closed the workplace and 

enabled employees to telework for the purpose of protecting their safety from COVID-19, or otherwise 

chose to permit telework, does not mean that the employer permanently changed a job’s essential 

functions, that telework is always a feasible accommodation, or that it does not pose an undue hardship.” 

question D.15.

642 G. Livermore and J. Schimmel Hyde, “Workers with Disabilities Face Unique Challenges in Weathering the 

COVID-19 Pandemic,” Mathematica (Blog), May 28, 2020, https://www.mathematica.org/blogs/workers

-with-disabilities-face-unique-challenges-in-weathering-the-covid-19-pandemic.

643 U.S. Department of Transportation, Bureau of Transportation Statistics, “Travel Patterns of American Adults 

with Disabilities,” January 12, 2021, https://www.bts.gov/travel-patterns-with-disabilities; U.S. Department 

The Impact of COVID-19 on People with Disabilities 245
of Transportation, “Draft Strategic Plan on Accessible Transportation,” January 2021, 3, https://www

.transportation.gov/sites/dot.gov/files/2021-01/DOT%20Draft%20Strategic%20Plan%20on%20Accessible

%20Transportation%20January%202021_1.pdf.

644 Centers for Disease Control, “Prevalence of Disability and Disability Types by Urban-Rural County 

Classification—United States, 2016”; Research and Training Center on Disability in Rural Communities, 

“Disability and Employment—Disability in America Series,” September 2016, http://rtc.ruralinstitute.umt.edu

/research-findings/geography/disability-and-employment/.

645 Hwang v. Kan. State Univ., 753 F.3d 1159, 1161 (10th Cir. 2014); D. Frank, et al, “Judge Gorsuch Failed Our 

Family,” San Francisco Chronicle, March 15, 2017, https://www.sfchronicle.com/opinion/openforum/article

/Judge-Gorsuch-failed-our-family-11001615.php; see also Severson v. Heartland Woodcraft, Inc., 872 F.3d 476, 

479 (7th Cir. 2017) (employer not required to grant additional two- to three-month leave after 12 weeks of 

FMLA leave expired).

646 U.S. Equal Employment Opportunity Commission, “What You Should Know about COVID-19 and the ADA, the 

Rehabilitation Act, and Other EEO Laws,” question D.13 (“[A]n employee without a disability is not entitled 

under the ADA to tele work as an accommodation in order to protect a family member with a disability 

from potential COVID-19 exposure.”), June 11, 2020, https://www.eeoc.gov/wysk/what-you-should-know

-about-covid-19-and-ada-rehabilitation-act-and-other-eeo-laws.

647 Centers for Disease Control and Prevention, “Use of Cloth Face Coverings to Help Slow the Spread of 

COVID-19,” updated February 16, 2021, https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick

/diy-cloth-face-coverings.html; Centers for Disease Control and Prevention, “Social Distancing: Keep a Safe 

Distance to Slow the Spread,” updated November 17, 2021, https://www.cdc.gov/coronavirus/2019-ncov

/prevent-getting-sick/social-distancing.html.

648 See, e.g., Centers for Disease Control and Prevention, “Workplace Violence and COVID-19,” updated 

September 1, 2020 (“Workers may be threatened and assaulted as businesses try to put into place COVID-19 

prevention policies and practices  . . . These threats and assaults can come from customers, other employees, 

or employers.”), https://www.cdc.gov/coronavirus/2019-ncov/community/organizations/business-employers

/limit-workplace-violence.html; C. Hammonds and J. Kerrissey, “At the Frontlines of the Debate on Masks: 

Worker Experiences Enforcing COVID-19 Safety Protocols” (University of Massachusetts, Amherst, Mass.: 

Nov. 23, 2020) (“Roughly half (49 percent) of workers who have asked a customer or co-worker to comply 

with COVID policies indicated that there were issues with compliance[.]”), https://www.umass.edu/lrrc/sites

/default/files/At%20the%20Frontlines%20of%20the%20Debate%20on%20Masks%20.pdf; Garen Staglin, 

Using Empathy And Emotional Intelligence To Navigate Workplace Conflict In The Covid-19 Era, Forbes (Dec. 

15, 2020), https://www.forbes.com/sites/onemind/2020/12/15/using-empathy-and-emotional-intelligence-to

-navigate-workplace-conflict-in-the-covid-19-era/?sh=114c575462d5.

649 Disability Rights Education & Defense Fund (DREDF) and Disability Rights California, “COVID-19: Face Masks 

and People With Disabilities,” July 23, 2020, https://dredf.org/2020/07/23/covid-19-face-masks-and-people

-with-disabilities/.

650 Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and the Recession on Older Workers,” 

National Bureau of Economic Research, June 2020, 5–6, https://www.nber.org/system/files/working_papers

/w27448/w27448.pdf; J. Smalligan and C. Boyens, “Policies for an Aging Labor Force: Keeping Older Workers 

with Health Conditions Employed,” Urban Institute, October 2020, 1–2, https://www.urban.org/sites/default

/files/publication/103083/policies-for-an-aging-labor-force.pdf.

651 Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and the Recession on Older Workers,” 

National Bureau of Economic Research, June 2020, https://www.nber.org/system/files/working_papers

/w27448/w27448.pdf.

652 Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and the Recession on Older Workers,” 

National Bureau of Economic Research, June 2020, 5, https://www.nber.org/system/files/working_papers

/w27448/w27448.pdf.

246 National Council on Disability
653 Id; J. Smalligan and C. Boyens, “Policies for an Aging Labor Force: Keeping Older Workers with Health 

Conditions Employed,” Urban Institute, October 2020, 1–2, https://www.urban.org/sites/default/files/publication

/103083/policies-for-an-aging-labor-force.pdf.

654 Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and the Recession on Older Workers,” 

National Bureau of Economic Research, June 2020, 10, 13, https://www.nber.org/system/files/working

_papers/w27448/w27448.pdf.

655 O. Davis, et al., “A First in Nearly 50 Years, Older Workers Face Higher Unemployment than MidCareer 

Workers,” Schwartz Center for Economic Policy Analysis at The New School for Social Research, 2020, https://

www.economicpolicyresearch.org/images/Retirement_Project/status_of_older_workers_reports

/Q3_2020_OWAG_V6.pdf.

656 Id.

657 DREDF Convening on People with Disabilities in Education and Employment During COVID-19, Nov. 10, 2020 

(documentation on file with DREDF).

658 Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and the Recession on Older Workers,” 

National Bureau of Economic Research, June 2020, 5, https://www.nber.org/system/files/working_papers

/w27448/w27448.pdf.

659 Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and the Recession on Older Workers,” 

National Bureau of Economic Research, June 2020, https://www.nber.org/system/files/working_papers

/w27448/w27448.pdf.

660 See J. Smalligan and C. Boyens, “Policies for an Aging Labor Force: Keeping Older Workers with Health 

Conditions Employed,” Urban Institute, October 2020, https://www.urban.org/sites/default/files/publication

/103083/policies-for-an-aging-labor-force.pdf.

661 J. Smalligan and C. Boyens, “Policies for an Aging Labor Force: Keeping Older Workers with Health Conditions 

Employed,” Urban Institute, October 2020, 1, https://www.urban.org/sites/default/files/publication/103083

/policies-for-an-aging-labor-force.pdf.; Truc Thi Mai Bui, et al., “Early Evidence on the Impact of Covid-19 and 

the Recession on Older Workers,” National Bureau of Economic Research, June 2020, 6–7, https://www.nber

.org/system/files/working_papers/w27448/w27448.pdf.

662 J. Smalligan and C. Boyens, “Policies for an Aging Labor Force: Keeping Older Workers with Health Conditions 

Employed,” Urban Institute, October 2020, 4, https://www.urban.org/sites/default/files/publication/103083

/policies-for-an-aging-labor-force.pdf.

663 Id. at 3.

664 National Council on Disability, “Policies from the Past in a Modern Era: The Unintended Consequences of 

the AbilityOne Program & Section 14(c),” October 14, 2020, 20–22, https://ncd.gov/sites/default/files/NCD

_AbilityOne_508.pdf; National Council on Disability, “Subminimum Wage and Supported Employment,” 

August 23, 2012, 9, 18, https://ncd.gov/sites/default/files/NCD_Sub%20Wage_508.pdf.

665 National Council on Disability, “Policies from the Past in a Modern Era: The Unintended Consequences of the 

AbilityOne Program & Section 14(c),” October 14, 2020, 22, 24–25, https://ncd.gov/sites/default/files/NCD

_AbilityOne_508.pdf.

666 National Council on Disability, “Subminimum Wage and Supported Employment,” August 23, 2012, 9, 18, 

https://ncd.gov/sites/default/files/NCD_Sub%20Wage_508.pdf.

667 U.S. Commission on Civil Rights, “Subminimum Wages: Impacts on the Civil Rights of People with Disabilities,” 

September 2020, 5, https://www.usccr.gov/files/2020-09-17-Subminimum-Wages-Report.pdf.

668 National Council on Disability Letter on Transformation to Competitive Integrated Employment Act, April 7, 2021, 

https://ncd.gov/publications/2021/ncd-letter-transformation-competitive-integrated-employment-act; U.S. 

House of Representatives Committee on Education and Labor, “Scott, McMorris Rodgers Introduce 

Bipartisan Bill to Help Workers with Disabilities Access Good-Paying Jobs,” press release, April 6, 2021, 

https://edlabor.house.gov/media/press-releases/scott-mcmorris-rodgers-introduce-bipartisan-bill-to-help

-workers-with-disabilities-access-good-paying-jobs.

The Impact of COVID-19 on People with Disabilities 247
669 CommunicationFIRST, “Are AAC Users at Greater Risk Of Dying from Covid?” December 20, 2020, https://

communicationfirst.org/are-aac-users-at-greater-risk-of-dying-from-covid/.

670 Cf. B. S. Mitchell, “Expanding the Integration Mandate to Employment: The Push to Apply the Principles 

of the ADA and the Olmstead Decision to Disability Employment Services,” 30 ABA Journal Lab. & Emp. 

Law 155, 162–63 (Fall 2014); Okla. Goodwill Indus. v. Okla. Emp’t Sec. Comm’n, 219 P.3d 540, 541 (Okla. 

Supreme Ct., July 7, 2009) (upholding exemption of employers like Goodwill from requirement to participate 

in unemployment compensation system for people with disabilities in sheltered workshops); Tyler v. Smith, 

472 F. Supp. 2d 818, 829 (M.D. La. 2006) (dismissing claims of people with disabilities working in sheltered 

workshops that their exclusion from state unemployment compensation system violated the Americans with 

Disabilities Act and Section 504).

671 State of New Jersey, “Sheltered Workshop Programs to Reopen Statewide,” September 2, 2020, https://

www.nj.gov/governor/news/news/562020/approved/20200902a.shtml; State of Missouri, “State Coronavirus 

Relief Funds to Assist Missouri Sheltered Workshops,” July 13, 2020, https://dese.mo.gov/communications

/news-releases/state-coronavirus-relief-funds-assist-missouri-sheltered-workshops.

Chapter Six: Effective Communication

672 A. Ortiz, “Lawsuit Demands Sign Language at White House Virus Briefings,” New York Times, August 4, 2020, 

https://www.nytimes.com/2020/08/04/us/politics/asl-interpreter-lawsuit-coronavirus-trump.html; Disability 

Rights Education and Defense Fund, et al., “DREDF Calls for Effective Communication in COVID Treatment,” 

May 29, 2020, https://dredf.org/2020/06/01/dredf-calls-for-effective-communication-in-covid-treatment/.

673 42 U.S.C. §§ 12101, et. seq.; 28 C.F.R. §§ 35.130 (prohibiting disability discrimination by Title II entities, i.e., 

state and local government entities), 35.160 (Title II requirement to provide communication supports), 36.302 

(requiring Title III entities, i.e., places of public accommodation, to provide disability-related modifications as 

needed), 36.303 (Title II requirement to provide communication supports).

674 29 U.S.C. § 794 (prohibiting disability discrimination by entities receiving federal financial assistance); 45 C.F.R. 

§ 84.4 (same), 84.62 (requirement to provide communication supports); 28 C.F.R. § 41.52 (requirement to provide 

aids, benefits, and services to people with disabilities at a level that affords equal opportunity to obtain the 

same result, to gain the same benefit, or to reach the same level of achievement as that provided to others).

675 42 U.S.C. § 18116 (prohibiting disability discrimination by all health programs and activities that receive federal 

financial assistance); 45 C.F.R. 92.101(a)(1), 92.205 (requiring effective communication).

676 See, e.g., Centers for Disease Control and Prevention, “People Who Are at Higher Risk for Severe Illness,” 

May 14, 2020, https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-at-higher-risk.html; 

K. Courtenay and B. Perera, “COVID-19 and people with intellectual disability: impacts of a pandemic,” Irish 

Journal of Psychological Medicine 37, (May 14, 2020): 231–36, available at https://doi.org/10.1017/ipm.2020.45

(“People with ID are at a greater risk of infection for a range of reasons that include physical health problems, 

social circumstances and limitations and understanding”).

677 U.S. Department of Health and Human Services Office for Civil Rights, “Disability Resources for Effective 

Communication,” January 22, 2020, https://www.hhs.gov/civil-rights/for-individuals/special-topics/hospitals

-effective-communication/disability-resources-effective-communication/index.html.

678 Disability Rights Education and Defense Fund, et al., “DREDF Calls for Effective Communication in COVID 

Treatment,” May 29, 2020, https://dredf.org/2020/06/01/dredf-calls-for-effective-communication-in-covid

-treatment/.; G. Naylor, L. A. Burke and J. A. Holman, “Covid-19 Lockdown Affects Hearing Disability and 

Handicap in Diverse Ways: A Rapid Online Survey Study,” Ear & Hearing 41, no. 6 (July 23, 2020): 1442–49, 

1442 (finding “[t]here is increased anxiety (especially among the worse hearing group) concerning verbal 

communication situation and access to audiology services, and greater rumination about one’s own 

hearing loss”).

248 National Council on Disability
679 CDC Now Recommends Americans Consider Wearing Cloth Face Coverings In Public, National Public Radio, 

April 3, 2020. ttps://www.npr.org/sections/coronavirus-live-updates/2020/04/03/826219824/president

-trump-says-cdc-now-recommends-americans-wear-cloth-masks-in-public. This information continued to be 

updated throughout the pandemic. See, e.g., Centers for Disease Control and Prevention, “Use of Cloth Face 

Coverings to Help Slow the Spread of COVID-19,” February 16, 2021, https://www.cdc.gov/coronavirus/2019

-ncov/prevent-getting-sick/diy-cloth-face-coverings.html.

680 Centers for Disease Control and Prevention, “People Who Are at Higher Risk for Severe Illness,” May 14, 

2020, https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-at-higher-risk.html.

681 ADA National Network, “Healthcare and Face Coverings: Reducing Communication Barriers for Deaf and Hard 

of Hearing Patients,” 2021, https://adata.org/factsheet/healthcare-and-face-coverings.

682 American Speech Language-Hearing Association, “Communicating Effectively While Wearing Masks and 

Physical Distancing,” last visited April 23, 2021, https://www.asha.org/public/Communicating-Effectively

-While-Wearing-Masks-and-Physical-Distancing/.

683 Id.; R. Severino et al., “Best Practices for Patient-Clinician Communication for People with Disabilities in the 

Era of COVID-19,” National Academies of Sciences, Engineering, and Medicine, (June 19, 2020), https://www

.nationalacademies.org/event/06-19-2020/best-practices-for-patient-clinician-communication-for-people

-with-disabilities-in-the-era-of-covid-19-a-webinar; Disability Rights Education and Defense Fund, et al., 

“DREDF Calls for Effective Communication in COVID Treatment,” May 29, 2020, https://dredf.org/2020/06/01

/dredf-calls-for-effective-communication-in-covid-treatment/.

684 G. Naylor, L. A. Burke, and J. A. Holman, “Covid-19 Lockdown Affects Hearing Disability and Handicap in 

Diverse Ways: A Rapid Online Survey Study,” Ear & Hearing 41, no. 6, (July 23, 2020): 1442–49.

685 Id. at 1447.

686 Id. at 1445.

687 ADA National Network, “Healthcare and Face Coverings: Reducing Communication Barriers for Deaf and Hard 

of Hearing Patients,” 2021, https://adata.org/factsheet/healthcare-and-face-coverings.

688 Id.

689 G. Naylor, L. A. Burke, and J. A. Holman, “Covid-19 Lockdown Affects Hearing Disability and Handicap in 

Diverse Ways: A Rapid Online Survey Study,” Ear & Hearing 41, no. 6, (July 23, 2020): 1442–49, 1440.

690 See, e.g., Id. 1442; ADA National Network, “Healthcare and Face Coverings: Reducing Communication 

Barriers for Deaf and Hard of Hearing Patients,” 2021, https://adata.org/factsheet/healthcare-and-face

-coverings.; American Speech Language-Hearing Association, “Communicating Effectively While Wearing 

Masks and Physical Distancing,” last visited April 23, 2021, https://www.asha.org/public/Communicating

-Effectively-While-Wearing-Masks-and-Physical-Distancing/.g; M. Sabatello, T. Blankmeyer Burke, K. E. 

McDonald, and P. S. Appelbaum, “Disability, Ethics, and Health Care in the COVID-19 Pandemic,” American 

Journal of Public Health (August 20, 2020): e2.

691 G. Naylor, L. A. Burke, and J. A. Holman, “Covid-19 Lockdown Affects Hearing Disability and Handicap in 

Diverse Ways: A Rapid Online Survey Study,” Ear & Hearing 41, no. 6, (July 23, 2020): 1442–49, 1445.

692 ADA National Network, “Healthcare and Face Coverings: Reducing Communication Barriers for Deaf and Hard 

of Hearing Patients,” 2021, https://adata.org/factsheet/healthcare-and-face-coverings.

693 Centers for Disease Control and Prevention, “Cloth Face Coverings: Frequently Asked Questions,” April 4, 

2020, https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/cloth-face-cover-faq.html (“Cloth face 

coverings should not be placed on  . . . anyone who has trouble breathing, or is unconscious, .or otherwise 

unable to remove the cover without assistance . . .”); Disability Rights Education & Defense Fund (DREDF) and 

Disability Rights California, “COVID-19: Face Masks and People With Disabilities,” July 23, 2020, https://dredf

.org/2020/07/23/covid-19-face-masks-and-people-with-disabilities/.

694 Id.

The Impact of COVID-19 on People with Disabilities 249
695 See, e.g., L. Miller, “Coronavirus Poses Added Challenges for Hospital Patients Who Are Deaf or Hard 

of Hearing,” Los Angeles Times, April 16, 2020, https://www.latimes.com/california/story/2020-04-16

/coronavirus-deaf-hearing-hospitals-interpreters.

696 Disability Rights Education and Defense Fund, et al., “DREDF Calls for Effective Communication in COVID 

Treatment,” May 29, 2020, https://dredf.org/2020/06/01/dredf-calls-for-effective-communication-in-covid

-treatment/.

697 Id.”

698 J. Aguilera, “Coronavirus patients Who Don’t Speak English Could End Up Unable to Communicate in Their 

Last Moments of Life,” Time Magazine (April 15, 2020), https://time.com/5816932/coronavirus-medical

-interpreters/.

699 U.S. Department of Justice, Civil Rights Division, Disability Rights Section, “ADA Requirements: Effective 

Communication,” last visited April 23, 2021, https://www.ada.gov/effective-comm.htm.

700 Id.

701 M. Sabatello, T. Blankmeyer Burke, K. E. McDonald, and P. S. Appelbaum, “Disability, Ethics, and Health 

Care in the COVID-19 Pandemic,” American Journal of Public Health (August 20, 2020), at e3; ADA National 

Network, “Healthcare and Face Coverings: Reducing Communication Barriers for Deaf and Hard of Hearing 

Patients,” 2021, https://adata.org/factsheet/healthcare-and-face-coverings.

702 Id.; Massachusetts General Hospital, “Need-to-Know Information for Clinicians and Bedside Providers,” last 

visited February 19, 2020, https://www.massgeneral.org/news/coronavirus/equity-and-community-health

/communicating-with-disabilities/.

703 ADA National Network, “Healthcare and Face Coverings: Reducing Communication Barriers for Deaf and 

Hard of Hearing Patients,” 2021, https://adata.org/factsheet/healthcare-and-face-coverings.; K. Mandak, 

“Communication Supports for Children and Adults with Complex Communication Needs During the COVID-19 

Pandemic,” Rehabilitation Engineering Research Center on Augmentative and Alternative Communication

(April 8, 2020), https://rerc-aac.psu.edu/communication-supports-for-children-and-adults-with-complex

-communication-needs-during-the-covid-19-pandemic/.

704 T. M. Annaswamy, M. Verduzco-Gutierrez, and L. Frieden, “Telemedicine Barriers and Challenges for Persons 

with Disabilities: Covid-19 and Beyond,” Disability and Health Journal (forthcoming 2021), available at https://

doi.org/10.1016/j.dhjo.2020.100973.

705 Id. at 1–2.

706 T. M. Annaswamy, M. Verduzco-Gutierrez, and L. Frieden, “Telemedicine Barriers and Challenges for Persons 

with Disabilities: Covid-19 and Beyond,” Disability and Health Journal (forthcoming 2021), available at https://

doi.org/10.1016/j.dhjo.2020.100973; M. Sabatello, T. Blankmeyer Burke, K. E. McDonald, and P. S. Appelbaum, 

“Disability, Ethics, and Health Care in the COVID-19 Pandemic,” American Journal of Public Health (August 20, 

2020), e2; ADA National Network, “Healthcare and Face Coverings: Reducing Communication Barriers for 

Deaf and Hard of Hearing Patients.”

707 T. M. Annaswamy, M. Verduzco-Gutierrez, and L. Frieden, “Telemedicine Barriers and Challenges for Persons 

with Disabilities: Covid-19 and Beyond,” Disability and Health Journal (forthcoming 2021), available at https://

doi.org/10.1016/j.dhjo.2020.100973 2.

708 M. McKee, C. Moran and P. Zazove, “Overcoming Additional Barriers to Care for Deaf and Hard of Hearing 

Patients During COVID-19,” Journal of the American Medical Association 146, no. 9, (July 16, 2020): 781–82, 

https://doi.org/10.1001/jamaoto.2020.1705.

709 T. M. Annaswamy, M. Verduzco-Gutierrez, and L. Frieden, “Telemedicine Barriers and Challenges for Persons 

with Disabilities: Covid-19 and Beyond,” Disability and Health Journal (forthcoming 2021), available at https://

doi.org/10.1016/j.dhjo.2020.100973, 2.

710 See World Wide Web Consortium (W3C), “Web Content Accessibility Guidelines (WCAG),” https://www.w3

.org/WAI/standards-guidelines/wcag/.

250 National Council on Disability
711 Disability Rights Education and Defense Fund, et al., “DREDF Calls for Effective Communication in COVID 

Treatment,” May 29, 2020, https://dredf.org/2020/06/01/dredf-calls-for-effective-communication-in-covid

-treatment/., e2; J. Shapiro, “Hospital Visitor Bans Under Scrutiny After Disability Groups Raise Concerns 

Over Care,” National Public Radio, May 17, 2020, https://www.npr.org/2020/05/17/857531789/federal

-government-asked-to-tell-hospitals-modify-visit-bans.

712 Disability Rights Education and Defense Fund, et al., “DREDF Calls for Effective Communication in COVID 

Treatment,” May 29, 2020, https://dredf.org/2020/06/01/dredf-calls-for-effective-communication-in-covid

-treatment/.;” M. Sabatello, T. Blankmeyer Burke, K. E. McDonald, and P. S. Appelbaum, “Disability, 

Ethics, and Health Care in the COVID-19 Pandemic,” American Journal of Public Health (August 20, 

2020), e2.

713 See U.S. Department of Health and Human Services Office of Civil Rights (OCR), “OCR Resolves Complaints 

after State of Connecticut and Private Hospital Safeguard the Rights of Persons with Disabilities to Have 

Reasonable Access to Support Persons in Hospital Settings During COVID-19,” press release (June 9, 2020), 

https://www.hhs.gov/about/news/2020/06/09/ocr-resolves-complaints-after-state-connecticut-private

-hospital-safeguard-rights-persons.html; U.S. Department of Health and Human Services Office of Civil 

Rights (OCR), “OCR Resolves Three Discrimination Complaints After Medstar Health System Ensures Patients 

With Disabilities Can Have Support Persons in Healthcare Settings During Covid-19 Pandemic,” press release 

(February 25, 2021), https://www.hhs.gov/about/news/2021/02/25/ocr-resolves-three-discrimination-complaints

-after-medstar-health-system.html.

714 U.S. Department of Health and Human Services Office of Civil Rights (OCR), “OCR Resolves Complaints 

after State of Connecticut and Private Hospital Safeguard the Rights of Persons with Disabilities to Have 

Reasonable Access to Support Persons in Hospital Settings During COVID-19,” press release (June 9, 2020), 

https://www.hhs.gov/about/news/2020/06/09/ocr-resolves-complaints-after-state-connecticut-private

-hospital-safeguard-rights-persons.html; U.S. Department of Health and Human Services Office of Civil Rights 

(OCR), “OCR Resolves Three Discrimination Complaints After Medstar Health System Ensures Patients With 

Disabilities Can Have Support Persons in Healthcare Settings During Covid-19 Pandemic,” press release 

(February 25, 2021), https://www.hhs.gov/about/news/2021/02/25/ocr-resolves-three-discrimination

-complaints-after-medstar-health-system.html.

715 G. Naylor, L. A. Burke, and J. A. Holman, “Covid-19 Lockdown Affects Hearing Disability and Handicap in 

Diverse Ways: A Rapid Online Survey Study,” Ear & Hearing 41, no. 6, (July 23, 2020), 1442.

716 F. Hill, “The Pandemic Is a Crisis for Students with Special Needs,” The Atlantic, April 18, 2020, https://www

.theatlantic.com/education/archive/2020/04/special-education-goes-remote-covid-19-pandemic/610231/.

717 American Speech-Language Hearing Association, “Tips for Helping Students With Hearing Loss in Virtual 

and In-Person Learning Settings,” last visited April 23, 2021, https://www.asha.org/aud/Tips-for-Helping

-Students-With-Hearing-Loss-in-Virtual-and-In-Person-Learning-Settings/.

718 Id.

719 Id.

720 Id.

721 B. Venkatashiva Reddy and A. Gupta, “Importance of effective communication during COVID-19 infodemic,” 

Journal of Family Medicine and Primary Care 9, no. 8 (August 25, 2020): 3793–3796.

722 Disability Rights Education and Defense Fund, et al., “DREDF Calls for Effective Communication in COVID 

Treatment,” May 29, 2020, https://dredf.org/2020/06/01/dredf-calls-for-effective-communication-in-covid

-treatment/.

723 See Title II of the Americans with Disabilities Act, 42 U.S.C. §§ 12101, et. seq.; 28 C.F.R. §§ 35.130 

(prohibiting disability discrimination by Title II entities, i.e., state and local government entities), 35.160 

(Title II requirement to provide communication supports); Section 504 of the Rehabilitation Act, 29 U.S.C. 

§ 794 (prohibiting disability discrimination by entities receiving federal financial assistance); 45 C.F.R. § 84.4 

The Impact of COVID-19 on People with Disabilities 251
(same), 84.62 (requirement to provide communication supports); 28 C.F.R. § 41.52 (requirement to provide 

aids, benefits, and services to people with disabilities at a level that affords equal opportunity to obtain the 

same result, to gain the same benefit, or to reach the same level of achievement as that provided to others); 

Section 1557 of the Affordable Care Act, 42 U.S.C. § 18116 (prohibiting disability discrimination by all health 

programs and activities that receive federal financial assistance); 45 C.F.R. 92.101(a)(1), 92.205 (requiring 

effective communication).

724 Section 508 of the Rehabilitation Act, 29 U.S.C. § 794d; 36 C.F.R. § 1194.1 (requiring federal agencies’ publicfacing electronic content to comply with WCAG 2.0 Levels A and AA, including that all “informational video 

and multimedia productions which support the agency’s mission, regardless of format, that contain speech or 

other audio information necessary for the comprehension of the content, . . . be open or closed captioned.”); 

see also Information and Communication Technology (ICT) Standards and Guidelines (Final Rule), 82 Fed. Reg. 

5790 (Jan. 18, 2017), available at https://www.govinfo.gov/content/pkg/FR-2017-01-18/pdf/2017-00395.pdf.

725 36 C.F.R. § 1194.1; Sabatello et al., e2.

726 See, e.g., A. Ortiz, “Lawsuit Demands Sign Language at White House Virus Briefings,” New York Times, 

August 4, 2020, (discussing, in part, how Governor Cuomo of New York failed to provide sign language 

interpreters during his daily television broadcasts providing updates on the developing COVID-19 pandemic) 

https://www.nytimes.com/2020/08/04/us/politics/asl-interpreter-lawsuit-coronavirus-trump.html.

727 Id.

728 The White House did provide English captions and transcripts. However, English and ASL are two different 

languages. Captioning uses English while ASL is provided through interpreters. This means that the briefings 

were not accessible for many people who are Deaf and Hard of Hearing, who rely on ASL instead of English. 

National Association of the Deaf, “Judge Orders White House to Provide ASL Interpreters” (September 11, 

2020), https://www.nad.org/2020/09/11/judge-orders-white-house-to-provide-asl-interpreters/.

729 Id.

730 Id.

731 Id.

732 Federal Emergency Management Agency, “COVID-19 Best Practice Information: Considerations for People 

with Disabilities,” July 17, 2020, https://www.fema.gov/sites/default/files/2020-07/fema_covid_bp_disability

-considerations.pdf.

Chapter Seven: Addressing the Impact of COVID-19 on Mental Health and Suicide

733 See, e.g., N. Panchal et al., “The Implications of COVID-19 for Mental Health and Substance Use,” February 10, 

2021, Kaiser Family Foundation, https://www.kff.org/coronavirus-covid-19/issue-brief/the-implications-of

-covid-19-for-mental-health-and-substance-use/; J. Holt-Lunstad, “The Double Pandemic of Social Isolation 

and COVID-19: Cross-Sector Policy Must Address Both,” June 22, 2020, Health Affairs Blog, https://www

.healthaffairs.org/do/10.1377/hblog20200609.53823; T.-J. Hwang et al., “Loneliness and Social Isolation During 

the COVID-19 Pandemic,” International Psychgeriatrics, May 26, 2020. https://www.ncbi.nlm.nih.gov/pmc

/articles/PMC7306546/.

734 M. E. Czeisler et al., “Morbidity and Mortality Weekly Report: Mental Health, Substance Use, and Suicidal 

Ideation During the COVID-19 Pandemic - United States, June 24–30, 2020,” Centers for Disease Control 

and Prevention, Morbidity and Mortality Weekly Report 69, No. 32, (August 14, 2020): 1049–57, http://dx.doi

.org/10.15585/mmwr.mm6932a1; J. Kluger, “The Coronavirus’ Effect on Kids’ Mental Health Is Deepening,” 

Time, July 23, 2020. https://time.com/5870478/children-mental-health-coronavirus/.

735 M. E. Czeisler et al., “Morbidity and Mortality Weekly Report: Mental Health, Substance Use, and Suicidal 

Ideation During the COVID-19 Pandemic - United States, June 24–30, 2020,” Centers for Disease Control and 

Prevention, Morbidity and Mortality Weekly Report 69, No. 32, (August 14, 2020): 1049–57.

736 Id. at 1053.

252 National Council on Disability
737 N. Panchal et al., “The Implications of COVID-19 for Mental Health and Substance Use,” February 10, 2021, 

Kaiser Family Foundation, https://www.kff.org/coronavirus-covid-19/issue-brief/the-implications-of-covid-19

-for-mental-health-and-substance-use/.

738 J. Hwang et al., “Loneliness and Social Isolation During the COVID-19 Pandemic,” International Psychgeriatrics, 

May 26, 2020. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306546/.

739 N. Panchal et al., “The Implications of COVID-19 for Mental Health and Substance Use,” February 10, 2021, 

Kaiser Family Foundation, https://www.kff.org/coronavirus-covid-19/issue-brief/the-implications-of-covid-19

-for-mental-health-and-substance-use/.

740 J. Hwang et al., “Loneliness and Social Isolation During the COVID-19 Pandemic,” International 

Psychgeriatrics, May 26, 2020. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306546/.

741 N. Panchal et al., “The Implications of COVID-19 for Mental Health and Substance Use,” February 10, 

2021, Kaiser Family Foundation, https://www.kff.org/coronavirus-covid-19/issue-brief/the-implications-of

-covid-19-for-mental-health-and-substance-use/.

742 Id.

743 Associated Press, “Mental Health and COVID-19 Collide for Veterans,” February 27, 2021, https://www.abc10

.com/article/news/nation-world/mental-health-covid-veterans/507-c62c8873-e195-4013-9689-36e8490c85a6. 

This data comes from the Department of Veterans’ Affairs’ 2020 National Veteran Suicide Prevention Annual 

Report. Because these reports are two years behind real time, the data reflects suicide rates before the 

pandemic.

744 A. Peterson and L. Berghammer, “Invisible Wounds and COVID-19: Heightened Risk for Wounded Warriors,” 

Wounded Warriors Project, December 2020, 3, https://www.woundedwarriorproject.org/media/wfbjwylf

/wwp20_0135_exe_covid_wpaper.pdf.

745 Id. at 2.

746 S. Stefan, November 10 2020 Convening: Mental Health & Suicide Breakout.

747 M. Hackett, “COVID-19-Related Mental Health Issues Could Have Long-term Effects on Healthcare Workers,” 

Healthcare Finance News, January 26, 2021, https://www.healthcarefinancenews.com/news/covid-19-related

-mental-health-issues-could-have-long-term-effects-healthcare-workers.

748 R. Kamal, et al., “Both Remote and On-Site Workers Are Grappling with Serious Mental Health Consequences 

of COVID-19,” Kaiser Family Foundation, December 22, 2020, https://www.kff.org/policy-watch/both-remote

-and-on-site-workers-are-grappling-with-serious-mental-health-consequences-of-covid-19/.

749 Id. at 2.

750 Id. at 1.

751 Id. at 1.

752 Harvard Medical School Center for Primary Care, “An Intersectional Approach to Understanding the Mental 

Health Challenges of America’s Essential Workers,” February 17, 2021, http://info.primarycare.hms.harvard.

edu/blog/mental-health-essential-workers.

753 Id.

754 Id.

755 R. Kamal, et al., “Both Remote and On-Site Workers Are Grappling with Serious Mental Health Consequences 

of COVID-19,” Kaiser Family Foundation, December 22, 2020, 1, https://www.kff.org/policy-watch/both

-remote-and-on-site-workers-are-grappling-with-serious-mental-health-consequences-of-covid-19/.

756 American Psychological Association, “Essential Workers More Likely to Be Diagnosed with a Mental 

Health Disorder During Pandemic,” March 11, 2021, https://www.apa.org/news/press/releases/stress/2021

/one-year-pandemic-stress-essential#:~:text=Essential%20workers%20were%20more%20than,9%25.

757 R. Kamal, et al., “Both Remote and On-Site Workers Are Grappling with Serious Mental Health Consequences 

of COVID-19,” Kaiser Family Foundation, December 22, 2020, 2, https://www.kff.org/policy-watch

/both-remote-and-on-site-workers-are-grappling-with-serious-mental-health-consequences-of-covid-19/.2.

The Impact of COVID-19 on People with Disabilities 253
758 S. S. Chatterjee, et al., “Impact of COVID-19 Pandemic on Pre-existing Mental Health Problems,” Asian J. 

Psychiatry, April 1, 2020, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7165115/pdf/main.pdf.

759 American Psychological Association, “1 in 4 Essential Workers Diagnosed with Mental Health Disorder Since 

Start of Pandemic,” 2021, https://www.apa.org/news/press/releases/stress/2021/march-essential-workers.

760 Id.

761 M. Hackett, “COVID-19-Related Mental Health Issues Could Have Long-term Effects on Healthcare Workers,” 

Healthcare Finance News, January 26, 2021, https://www.healthcarefinancenews.com/news/covid-19-related

-mental-health-issues-could-have-long-term-effects-healthcare-workers.

762 Id.

763 Id.

764 Harvard Medical School Center for Primary Care, “An Intersectional Approach to Understanding the Mental 

Health Challenges of America’s Essential Workers,” February 17, 2021, http://info.primarycare.hms.harvard.

edu/blog/mental-health-essential-workers.

765 Centers for Medicare and Medicaid Services, Center for Medicaid and State Operations, State Medicaid 

Director Letter #07-011 (August 15, 2007), https://downloads.cms.gov/cmsgov/archived-downloads/SMDL

/downloads/SMD081507A.pdf.

766 See, e.g., A. Kumar et al., “Peer Support in an Outpatient Program for Veterans with Posttraumatic Stress 

Disorder: Translating Participant Experiences into a Recovery Model,” Psychological Services, vol. 16 no. 3 

(August 2019): 415–24, https://pubmed.ncbi.nlm.nih.gov/30407050/.

767 American Psychological Association, “1 in 4 Essential Workers Diagnosed with Mental Health Disorder Since 

Start of Pandemic,” 2021, https://www.apa.org/news/press/releases/stress/2021/march-essential-workers.

768 Harvard Medical School Center for Primary Care, “An Intersectional Approach to Understanding the Mental 

Health Challenges of America’s Essential Workers,” February 17, 2021, http://info.primarycare.hms.harvard.

edu/blog/mental-health-essential-workers.

769 R. Kamal, et al., “Both Remote and On-Site Workers Are Grappling with Serious Mental Health Consequences 

of COVID-19,” Kaiser Family Foundation, December 22, 2020, 2, https://www.kff.org/policy-watch/both

-remote-and-on-site-workers-are-grappling-with-serious-mental-health-consequences-of-covid-19/.2.

770 Id. at 2.

771 R. E. Drake et al., “COVID-19, Unemployment, and Behavioral Health Conditions: The Need for Supported 

Employment,” Administration and Policy in Mental Health and Mental Health Services Research, no. 48 

(March 21, 2021): 388–392, https://link.springer.com/content/pdf/10.1007/s10488-021-01130-w.pdf; 

N. Panchal et al., “The Implications of COVID-19 for Mental Health and Substance Use,” February 10, 2021, 

Kaiser Family Foundation, https://www.kff.org/coronavirus-covid-19/issue-brief/the-implications-of-covid-19

-for-mental-health-and-substance-use/.

772 G. Falk, “Unemployment Rates During the COVID-19 Pandemic: In Brief,” Library of Congress, Congressional 

Research Service R46554, 2020, updated January 12, 2021, https://fas.org/sgp/crs/misc/R46554.pdf.

773 Id.

774 R. E. Drake et al., “COVID-19, Unemployment, and Behavioral Health Conditions: The Need for Supported 

Employment,” Administration and Policy in Mental Health and Mental Health Services Research, no. 48 

(March 21, 2021): 388–392, https://link.springer.com/content/pdf/10.1007/s10488-021-01130-w.pdf 388.

775 Id. at 388.

776 Id.

777 G. Falk, “Unemployment Rates During the COVID-19 Pandemic: In Brief,” Library of Congress, Congressional 

Research Service R46554, 2020, updated January 12, 2021, 3, https://fas.org/sgp/crs/misc/R46554.pdf.

778 Meadows Mental Health Policy Institute, “Projected Covid-19 MHSUD Impacts, Volume 1: Effects of COVIDInduced Economic Recession (COVID Recession),” MMHPI, April 28, 2020, 4, http://mmhpi.org/wp-content

/uploads/2020/09/COVID-MHSUDImpacts.pdf.

254 National Council on Disability
779 S. Pappas, “The Unemployment and Economic Crises Sparked by COVID-19 Are Expected to Have Farreaching Mental Health Impacts,” American Psychological Association Monitor on Psychology, 51, no. 7 

(October 1, 2020): 45, https://www.apa.org/monitor/2020/10/toll-job-loss.

780 R. E. Drake et al., “COVID-19, Unemployment, and Behavioral Health Conditions: The Need for Supported 

Employment,” Administration and Policy in Mental Health and Mental Health Services Research, no. 48 

(March 21, 2021): 388–392, 389, https://link.springer.com/content/pdf/10.1007/s10488-021-01130-w.pdf.

781 Id. at 388.

782 Id. at 389.

783 Id. at 389. This recommendation comes from Robert Drake and Gary Bond, two of the researchers who have 

helped develop the Individual Placement and Support (IPS) model of supported employment for people with 

psychiatric disabilities, along with Dr. Lloyd Sederer, the former chief medical officer for New York State’s 

mental health authority.

784 Id. at 389.

785 Id. at 390.

786 M. E. Czeisler et al., “Morbidity and Mortality Weekly Report: Mental Health, Substance Use, and Suicidal 

Ideation During the COVID-19 Pandemic - United States, June 24–30, 2020,” Centers for Disease Control 

and Prevention, Morbidity and Mortality Weekly Report 69, No. 32, (August 14, 2020): 1049–57, http://

dx.doi.org/10.15585/mmwr.mm6932a1; R. T. Leeb, et al., “Mental Health–Related Emergency Department 

Visits Among Children Aged <18 Years During the COVID-19 Pandemic— United States, January 1–October 

17, 2020,” Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report 69, no. 45, 

(November 13, 2020): 1675–80, https://www.cdc.gov/mmwr/volumes/69/wr/pdfs/mm6945a3-H.pdf.

787 Id.

788 Id. at 1679.

789 Id. at 1679.

790 Id. at 1679.

791 C. Turner, C. Herman, and R. Chatterjee, “‘I’ve Tried Everything’: Pandemic Worsens Child Mental Health Crisis,” 

NPR Morning Edition, January 18, 2021, https://www.npr.org/sections/health-shots/2021/01/18/953581851

/ive-tried-everything-pandemic-has-cut-options-for-kids-with-mental-illness.

792 Id.

793 E. K. Howley, “Children’s Mental Health Crisis Could Be a Next ‘Wave’ in the Pandemic,” U.S. News & World 

Report, March 4, 2021, https://www.usnews.com/news/health-news/articles/2021-03-04/childrens-mental

-health-crisis-could-be-a-next-wave-in-the-pandemic.

794 Id.

795 Active Minds, “Covid-19 Impact on College Student Mental Health,” Spring 2020, 1, https://www.activeminds

.org/wp-content/uploads/2020/04/Student-Survey-Infographic.pdf.

796 K. A. Davis, “Disability and Campus Mental Health,” Mental Health America, October 2020, 2, https://

mhanational.org/sites/default/files/Disability%20and%20Campus%20Mental%20Health%20Survey%20

FINAL.pdf.

797 E. K. Howley, “Children’s Mental Health Crisis Could Be a Next ‘Wave’ in the Pandemic,” U.S. News & World 

Report, March 4, 2021, https://www.usnews.com/news/health-news/articles/2021-03-04/childrens-mental

-health-crisis-could-be-a-next-wave-in-the-pandemic.

798 C. Turner, C. Herman, and R. Chatterjee, “‘I’ve Tried Everything’: Pandemic Worsens Child Mental Health Crisis,” 

NPR Morning Edition, January 18, 2021, https://www.npr.org/sections/health-shots/2021/01/18/953581851

/ive-tried-everything-pandemic-has-cut-options-for-kids-with-mental-illness.

799 E. K. Howley, “Children’s Mental Health Crisis Could Be a Next ‘Wave’ in the Pandemic,” U.S. News & 

World Report, March 4, 2021, https://www.usnews.com/news/health-news/articles/2021-03-04/childrens

-mental-health-crisis-could-be-a-next-wave-in-the-pandemic.

The Impact of COVID-19 on People with Disabilities 255
800 National Governor’s Association, “Supporting State Behavioral Health Systems During Covid-19 Response and 

Recovery,” November 17, 2020, https://www.nga.org/center/publications/supporting-state-behavior-health

-systems-covid-19/,1–2.

801 Id. at 2.

802 Id.

803 Id. at 3.

804 Id.

805 Id. at 8.

806 Id. at 8.

807 Id. at 9.

808 Id. at 9.

809 Id. at 9.

810 Id. at 9; The Centers for Medicare and Medicaid Services guidance concerning prospective payments can be 

found at https://www.medicaid.gov/state-resource-center/downloads/covid-19-faqs.pdf. Centers for Medicare 

and Medicaid Services, “COVID-19 Frequently Asked Questions (FAQs) for State Medicaid and Children’s 

Health Insurance Program (CHIP) Agencies,” last updated January 6, 2021; A related bulletin concerning 

managed care can be found at https://www.medicaid.gov/sites/default/files/Federal-Policy-Guidance

/Downloads/cib051420.pdf. Center for Medicaid and CHIP Services Informational Bulletin, “Medicaid 

Managed Care Options in Responding to COVID-19,” May 14, 2020.

811 National Governor’s Association, “Supporting State Behavioral Health Systems During Covid-19 Response and 

Recovery,” November 17, 2020, 10, https://www.nga.org/center/publications/supporting-state-behavior-health

-systems-covid-19/.

812 Id. at 5, 6.

813 Id. at 4.

814 November 10 convening: Mental Health & Suicide breakout.

815 Remarks of Sera Davidow, November 10 convening: Mental Health & Suicide breakout.

816 Id.

817 November 10 convening: Mental Health & Suicide breakout and follow-up with participants.

818 November 10 convening: Mental Health & Suicide breakout.

819 Id.

820 Centers for Disease Control and Prevention, “Mental Health and Crisis,” updated January 21, 2021, https://

www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/managing-stress-anxiety.html; J. Gordon, “One Year In: 

COVID-19 and Mental Health,” NIMH Director’s Messages, April 9, 2021, https://www.nimh.nih.gov/about

/director/messages/2021/one-year-in-covid-19-and-mental-health; National Governor’s Association, “Supporting 

State Behavioral Health Systems During Covid-19 Response and Recovery,” November 17, 2020, 3, https://

www.nga.org/center/publications/supporting-state-behavior-health-systems-covid-19/.

821 National Suicide Hotline Designation Act of 2020, Public Law No. 116-172 (enacted October 27, 2020). FCC 

regulations require that all 988 calls be directed to the National Suicide Prevention Line by July 16, 2022. 

Li Cohen, “988 to Become the New 911 for Suicide Prevention,” CBS News, July 16, 2020, https://www

.cbsnews.com/news/988-to-become-the-new-911-for-national-suicide-prevention-lifeline/.

822 Susan Stefan, November 10, 2020, convening: Mental Health & Suicide Breakout.

823 Id.

824 R. Wipond, “Suicide Hotlines Bill Themselves As Confidential—Even As Some Trace Your Call,” Mad In 

America, November 29, 2020, https://www.madinamerica.com/2020/11/suicide-hotlines-trace-your-call/?

fbclid=IwAR2xLnJOlW42PkwIeTa_BhN9h4s6s1hl12rq5DZvIcbG6mauEQvkHDA7qEA.

825 Id.

256 National Council on Disability
826 L. Harris, “The New Mental Health Crisis Line Wants to Track Your Location,” Disability Visibility Project, April 19, 

2021, https://disabilityvisibilityproject.com/2021/04/19/the-new-national-mental-health-crisis-line-wants-to

-track-your-location/.

827 American Psychological Association, “After Decades of Research, Science Is No Better Able to Predict Suicidal 

Behaviors,” November 15, 2016, https://www.apa.org/news/press/releases/2016/11/suicidal-behaviors; See 

also Columbia University Irving Medical Center News Release, “Which Suicide Prevention Strategies Work?” 

February 18, 2021, https://www.eurekalert.org/pub_releases/2021-02/cuim-wsp021821.php (“The researchers 

found that screening school children or the general population for those at risk for suicide–the tenth leading 

cause of death in the U.S. with 48,344 suicide deaths in 2018–have generally not reduced suicide rates.”).

828 Susan Stefan, November 10, 2020, convening: Mental Health & Suicide Breakout.

829 Id.

830 Id.; Inner Compass Initiative, “Alternatives to Suicide (Alt2Su),” https://www.theinnercompass.org/resource

/alternatives-suicide-alt2su#:~:text=The%20Western%20Mass%20RLC%20developed,move%20through

%20those%20darkest%20places.

831 Susan Stefan, November 10, 2020, convening: Mental Health & Suicide Breakout.

832 Id.

833 T. Rodriguez, “Suicide Prevention in the Context of COVID-19,” PsychiatryAdvisor, January 20, 2021, https://

www.psychiatryadvisor.com/home/topics/suicide-and-self-harm/suicide-prevention-in-the-context-of-covid-19/.

834 See also the principles recommended by the Consortium of Citizens with Disabilities in a set of Telehealth 

Principles developed by the Health Task Force to ensure fully accessible and equitable telehealth services, 

https://www.nacdd.org/wp-content/uploads/2020/08/CCD-Health-Task-Force-Telehealth-Principles-July-2020.pdf.

The Impact of COVID-19 on People with Disabilities 257
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004