Responding to the Needs of People with Disabilities in the

COVID-19 Pandemic: Community Perspectives from Centers for

Independent Living

Jae Kennedy, Lex Frieden, Jennifer Dick-Mosher

Journal of Health Care for the Poor and Underserved, Volume 32, Number

3, August 2021, pp. 1265-1275 (Article)

Published by Johns Hopkins University Press

DOI:

For additional information about this article

[ Access provided at 23 Aug 2021 17:54 GMT from Washington State University Libraries ]

https://doi.org/10.1353/hpu.2021.0130

https://muse.jhu.edu/article/802259
© Meharry Medical College Journal of Health Care for the Poor and Underserved 32 (2021): 1265–1275.

Responding to the Needs of People with Disabilities 

in the COVID-19 Pandemic: Community 

Perspectives from Centers for Independent Living

Jae Kennedy, PhD

Lex Frieden

Jennifer Dick- Mosher, PhD

Abstract: Centers for Independent Living (CILs) are federally funded, community- based 

organizations designed and operated by people with disabilities that provide individual and 

systems advocacy, peer support, information and referral, independent living skills training, 

and transition services throughout the U.S. and its territories. Centers for Independent Living therefore offer a rich and detailed perspective on the needs of people with disabilities 

during the COVID-19 pandemic. In this brief report, we summarize COVID-19-related 

issues raised by 144 CIL administrators and staff in a national survey conducted in April 

and May 2020 and discuss their research and policy implications. Respondents voiced concerns about health and safety, long- term supportive services, social isolation, and economic 

insecurity. In the words of one center director, “The pandemic has pulled back the curtain 

on the depth of need in our local disability community.”

Key words: Access to health care, health disparities, economic issues related to disability, 

health policy, disability services.

Disability is not inherently linked to risk of COVID-19 infection,1

 but people with 

disabilities are much more likely to have underlying medical conditions that are 

associated with severe illness and death.2

 Adults with disabilities in the U.S. generally 

report poorer health, greater use of health services, and more problems with health care 

access and costs of care than those without disabilities.3

 As a disadvantaged minority 

population, they also face significant deficits relative to the general population in terms 

of income, education, employment, housing, transportation, and community participation.4

 This combination of limited resources and high needs creates a relatively thin 

“margin of health” and much greater vulnerability to communicable disease.5

The severe impact of the pandemic is most evident in the alarmingly high rates of 

COVID-19 mortality observed among residents of nursing homes.6

 Most adults with 

disabilities live in the community, but they share many of the same risk factors as those 

BRIEF COMMUNICATION

JAE KENNEDY and JENNIFER DICK- MOSHER are affiliated with the Elson S Floyd College of 

Medicine at Washington State University. LEX FRIEDEN is affiliated with the University of Texas, 

Health Science Center at Houston. Please address all correspondence to Jae Kennedy, Elson S Floyd 

College of Medicine, Washington State University, Health Education and Research Building, Room 430, 

665 N Riverpoint Blvd, Spokane, WA 99202-1495; email: jjkennedy@wsu .edu; phone: (509) 599-0106.
1266 COVID‐19 related disability needs

who live in institutional settings (e.g. multiple comorbid health conditions, older age, 

frequent interactions with medical professionals and service providers).7,8 Unfortunately, 

CDC surveillance efforts do not currently track rates of COVID-19 infection, hospitalization and death by disability status, though they have started reporting prevalence 

rates for some specific co-morbid conditions.9

As COVID-19 spread in the early spring of 2020, the Independent Living and Research 

Utilization Center (ILRU) at TIRR Memorial Herman began to receive communications 

from CIL administrators across the country, describing a surge in consumer needs and 

significant disruptions in the provision of independent living services. In response, 

the Collaborative on Health Reform and Independent Living (CHRIL) developed a 

CIL needs assessment using the ILRU/ IL- NET contact database and survey platform.

Our needs assessment provides a unique report on the needs of local disability 

communities in the early months of the pandemic. We identified two broad classes of 

issues—CIL operational concerns and the personal concerns of CIL staff and consumers 

with disabilities. In this brief report, we will focus on the second class of issues, but a 

full summary of our survey findings and methodology are now available on the CHRIL 

website at www .chril .org/ covid19. Our discussion of problem domains begins with a 

brief summary of key concerns, followed by several verbatim or lightly edited quotations from survey respondents, and an overview of federal legislative proposals and 

laws that address these concerns. We end with a discussion of key research questions 

that could inform public policies and protect the interests of people with disabilities 

during and after this public health crisis.

Methods

Data collection and analysis. Study population. According to the National Council 

on Independent Living (NCIL), CILs are “community- based, cross- disability, nonprofit organizations that are designed and operated by people with disabilities . . . they 

operate according to a strict philosophy of consumer control, wherein people with all 

types of disabilities directly govern and staff the organization.”10 Centers for Independent Living provide individual and systems advocacy, peer support, information and 

referral, independent living skills training, and transition services. Consequently, CIL 

personnel can provide important and detailed insights on the current needs of people 

with disabilities during this public health crisis.

To reach CIL administrators, we used CIL- NET, a contact database and survey platform maintained by ILRU. On April 20, 2020, all current CIL- NET contacts were invited 

to complete a CHRIL/ IL- NET COVID-19 Needs Assessment and were reminded about 

this invitation on May 14 and June 4. After data- cleaning, our final sample included 

144 non- duplicative surveys from CIL administrators and staff.

Data analysis. Our survey included four open- ended questions: 1) Right now, what 

are the biggest pandemic challenges your CIL is facing in providing services to adults 

with disabilities? 2) What are the biggest pandemic concerns of your consumers? 3) 

What are the biggest pandemic concerns of your staff? and 4) What do you think the 

Administration for Community Living needs to know about the current needs of your 

local disability community?
Kennedy, Frieden, and Dick-Mosher 1267

The 144 respondents often listed multiple challenges, concerns, or needs for each 

question. These responses were separated and independently sorted. The authors used 

thematic analysis11to identify and validate four main categories of COVID-19 related 

needs (i.e., health and safety, long- term supportive services and personal assistance, 

social isolation, and economic security), and selected illustrative quotations describing 

those needs.

Results

Issues facing CIL staff and consumers with disabilities. Health and safety. Survey 

respondents noted that stay- at- home orders, medical office closures, and supply shortages 

made it much more difficult for people with disabilities to manage their chronic health 

conditions. Another common concern was procurement and distribution of personal 

protective equipment (PPE) for people with disabilities, given widespread shortages 

and prioritization strategies.12 The abrupt transition to telehealth was also disruptive, 

particularly for consumers who require regular visits for primary or specialty health 

services.13 Quotations illustrating these ideas follow.

[Consumers are having difficulty with] physical acquisition of medical care/ prescriptions, [as well as] scarce PPE.—respondent from New York

We are helping with food, water, wood, and other (cleaning supplies) deliveries to 

native people with disabilities and elderly citizens who are homebound and in very 

rural areas. Staff need gloves and masks.—respondent from Arizona

Even with food assistance, many grocery stores are low on supplies. Medically necessary diets are limited due to limited food.—respondent from Colorado

Many [consumers] have health issues that cannot be addressed through video calls 

or phone calls by doctors.—respondent from Indiana

Consumers are immuno- compromised and some are reliant on special equipment. 

They fear getting sick and hospitalized, especially now that discriminatory practices, 

such as rationing of resources/ equipment for those less “chronically ill” is occurring.—respondent from Texas

Food security was already a problem for many people with disabilities,14 and disruption of supplies and delivery systems was a challenge for many CIL consumers in the 

early months of the pandemic. States were given the option of expanding Supplemental 

Nutrition Assistance Program (SNAP) eligibility and benefits under the Families First 

Coronavirus Response Act (FFCRA, P.L. 1116-127), and most have done so.15 However, 

several respondents said consumers were having difficulty ordering food with their 

SNAP cards, and were worried about maintaining benefit eligibility.

Worries about infection, illness, and death from COVID-19 are not limited to people 

with disabilities, but concerns in this population are heightened by the real possibility of discrimination if they require medical treatment in crowded hospitals.16,17 The 

Consortium for Citizens with Disabilities (CCD) and other disability groups raised 
1268 COVID‐19 related disability needs

concerns about emergency rationing plans with the Secretary of HHS,18 and the Office 

for Civil Rights responded with a bulletin noting that multiple laws and regulations 

prohibit discrimination on the basis of disability, even during a medical emergency.19

However, the Disability Rights Education and Defense Fund (DREDF) observes that 

nearly a dozen discrimination complaints have been brought by disability groups against 

state agencies, and many have not been resolved.20

Long- term supportive services and personal assistance. Consumers living in nursing homes and other institutional settings were a particular source of concern for CIL 

administrators, given the high rates of infection and death in these facilities. However, 

transition services that help institutionalized residents return to the community have 

been suspended or scaled back at many CILs during the pandemic. Survey respondents attributed these changes to new state restrictions on visiting, concerns for the 

safety of CIL staff, administrative delays, and limited community resources. Illustrative 

quotations follow.

Nursing facility transitions are difficult when staff cannot enter facilities and there is 

a provider shortage.—respondent from Colorado

The percentage of COVID-19 related nursing home deaths should be center- stage 

in changing how America deals with people struggling to live at home. So, massive 

increase in funding, directed at making homecare the “go to” option, needs to happen 

now!—respondent from New York

Many consumers who live in the community do so with the help of paid attendants 

and non- paid caregivers. It is already a challenge to maintain dependable, long- term 

providers without the pandemic adding another layer of complications. Without 

aid, people with disabilities may not complete daily tasks like dressing, toileting, 

cooking, cleaning, eating, taking medications, etc. Some might not even get out of 

bed.—respondent from Texas

With many families practicing social distancing, a lot of our consumers’ attendants 

are not able to work with them.—respondent from Virginia

We have had many personal assistants unable or unwilling to come to work, and we 

are unable to provide PPE to those that are.—respondent from Illinois

Centers for Independent Living help consumers obtain and manage home and 

community- based services (HCBS) in their homes and communities, and survey 

respondents said that the pandemic has significantly disrupted these support arrangements. Some CIL staff struggled to help consumers and attendants get the PPE they 

need in order to receive and provide personal assistance safely. More broadly, there were 

concerns about increased demand and limited funding for personal assistance services.

Groups such as the CCD and Center for Public Representation are supporting 

provisions in federal legislation such as the Health and Economic Recovery Omnibus 

Emergency Solutions Act (HEROES, H.R. 6800), which would provide supplemental 

Medicaid funds for HCBS and recognize attendants and home health aides as essential 

workers.21 Americans Disabled for Attendant Programs Today (ADAPT) argues that 
Kennedy, Frieden, and Dick-Mosher 1269

the pandemic highlights the importance of passing the Disability Integration Act (DIA, 

H.R. 555/ S. 117), which would require all public and private insurance plans that cover 

long- term services and supports (LTSS) to allow consumers to choose where those 

services are received.22

Social isolation. Independent living services facilitate inclusion and participation 

for people with disabilities.23 The provision of these services has been disrupted by 

the pandemic, leaving CIL staff concerned about the unmet mental health needs of 

their consumers. As one administrator noted, the mental and emotional impacts of 

the pandemic can be severe and potentially long- lasting, particularly for consumers 

and others with pre- existing conditions, such as depression and anxiety. Monitoring 

and ameliorating mental health effects of COVID-19 among vulnerable populations, 

including people with disabilities, is a long- term research and policy priority.24 Quotations relevant to these points follow.

A population that is already isolated now feels even more isolated and that is having 

a negative impact on their mental health. People are calling wanting reassurance that 

someone is there for them and cares for them. – respondent from Minnesota

For some, the mental and emotional trauma is going to be short term, but for others—

and I daresay for most—this is going to have a long- term impact on everyone’s mental 

health.—respondent from New York

Many people, especially young adults, need face- to-face interaction. Many do not 

understand the “why’s” of isolation, even though many have been isolated much of 

their lives.—respondent from North Dakota

The Deaf community has been left out of most of the official updates in New York 

State. People who are blind are now afraid to touch anything, which is impacting 

independence and mental health.—respondent from New York

An essential aspect of any emergency is communication. So many consumers are 

unable to access information that is web based or being pushed out via social media 

because they lack the financial resources to obtain and retain a data plan and/or WiFi.—respondent from Nevada

Centers for Independent Living administrators report that many of their services 

have moved online, leaving many of their consumers behind. Phone calls or Zoom 

meetings are often a poor substitute for face- to-face peer interactions, but even these are 

complicated by significant economic and technological barriers. People with disabilities 

are less than half as likely as people without disabilities to have access to a computer 

at home, and are less likely to use the Internet.25,26 Furthermore, public information 

related to COVID-19 is not reliably communicated or disseminated in accessible 

formats for people with cognitive or sensory disabilities.27 The CCD has called for an 

increase in funds for the FCC’s Lifeline program, which provides discounted or free 

phones or broadband to low- income households,28 and the proposed HEROES Act 

includes $5.5 billion in grants and subsidies for increased broadband access during 

and after the pandemic.29

Economic insecurity. Centers for Independent Living are staffed by people with 
1270 COVID‐19 related disability needs

disabilities, and many of the staff ’s concerns regarding employment, health insurance, and childcare during the pandemic mirror those of their consumers. Centers 

for Independent Living were allocated $85 million in financial assistance from the 

Coronavirus Aid, Relief, and Economic Security Act (CARES, P.L. 116-136), but some 

staff and administrators worry about “being able to keep our doors open after our SBA 

loans run out.” The National Council on Independent Living (NCIL) suggests that an 

additional $200 million will be needed to sustain CIL services and staff in the coming 

year.30 Some responses illustrating these points follow.

Employment options are now virtually nonexistent.—respondent from Illinois

[CIL staff are concerned about] future income and continued paid health insurance, 

if the pandemic continues.—respondent from California

Staff are trying to work remotely during regular business hours but it is hard to do 

when you have young children at home, and they end up working later into the night 

as a result.—respondent from Illinois

Financial concerns if employment was lost and how to access unemployment benefits.—respondent from Michigan

Main concerns [from consumers] are getting mail from services such as section 8 

or SNAP and not being able to complete paperwork without assistance. They are 

concerned the assistance will be denied due to not completing recertification.—

respondent from New York

As is illustrated above, survey respondents noted that, after passage of the CARES Act, 

some consumers struggled with applying for unemployment benefits and stimulus 

checks. Centers for Independent Living help consumers apply for and maintain public 

benefits such as Social Security Disability Insurance (SSDI), Medicare, Supplemental 

Security Income (SSI), Medicaid, SNAP, Section 8 housing, and rental assistance. Administrators reported increased demand for these services during the initial months of the 

pandemic, and some had significant challenges in providing such support remotely. The 

proposed HEROES Act explicitly states that people receiving disability benefits should 

automatically receive stimulus payments, and expands funding for SNAP, Medicaid, 

and emergency housing assistance.

Discussion

Research Implications

Health and safety. Barriers to COVID-19 prevention and treatment identified by survey 

respondents persist across many parts of the country, and monitoring how people with 

disabilities and CILs are coping with local shortages, delays, and closures remains a 

research priority. The health effects of these disruptions are likely to affect people with 

disabilities disproportionately. We can anticipate a flurry of new studies documenting 

the health consequences of forgone medical treatment (e.g., not going to the hospital 

emergency department due to fear of infection, cancelling doctors’ appointments or 
Kennedy, Frieden, and Dick-Mosher 1271

wellness checks, postponing surgery, discontinuing behavioral health services), and 

should encourage these researchers to examine disability disparities closely.31

In the longer term, a growing number of case reports indicate that a potentially sizable 

portion of survivors are experiencing long- term clinical complications of COVID-19, 

including impaired function of the lungs, heart, brain, kidneys, and circulatory system.32

People with pre- existing chronic health conditions and disabilities will likely be at 

higher risk for these complications, but a portion of previously nondisabled individuals will also develop disabilities as a result of COVID-19 infection, increasing demand 

for disability benefits and services.33 Epidemiologists and clinicians should be careful 

to track the relative risks for people with disabilities as they monitor the long- term 

health consequences of this new virus.

Long- term supportive services and personal assistance. Broadly speaking, living in 

a nursing home appears to be an independent risk factor for COVID-19 infection and 

death, and under these circumstances, residents should be given the option and resources 

to move to a safer setting if they wish.34,35 The Supreme Court’s 1999 Olmstead v. L.C. 

decision stated that involuntary segregation of people with disabilities in institutional 

settings was a violation of the civil rights established in Title II of the Americans with 

Disabilities Act. Centers for Independent Living have led efforts to help people with 

disabilities transition from institutions to the community,36 and the pandemic death 

toll in nursing homes adds new urgency to these efforts. Frankly, we are not sure how 

much more research is needed here. Federal research and demonstration projects such 

as Money Follows the Person (MFP), described as the largest demonstration project in 

the history of Medicaid, show that people with disabilities can transition safely from 

institutions to the community, and improve their quality of life.37 Yet 13 years later, 

it remains a demonstration project rather than a federal program, and even these 

demonstration funds are due to run out in 2020 without permanent Congressional 

reauthorization.38 To rebalance the LTSS system in this country substantively, we will 

need significant federal support for affordable, accessible housing and personal assistance, with the ultimate goal of preventing institutional placement from the beginning 

of a person’s care.

Social isolation. Well before the COVID-19 pandemic, public health scientists were 

describing loneliness as epidemic in the U.S., with demonstrable consequences for health 

and longevity.39 Population studies show that people with disabilities are at higher risk 

of loneliness than those without disabilities,40 and many CIL personnel observed that 

the pandemic worsened this problem for their consumers. One of the most powerful 

characteristics of independent living services is the trust and solidarity established by 

multiple personal interactions between CIL staff with disabilities and consumers with 

disabilities who face similar challenges in work, health care, housing, transportation, and 

community living. Trying to maintain these relationships with phones and computers 

is a real challenge, and applied research on effective and affordable telecommunication 

technologies is a research priority in the current crisis.

Economic insecurity. According to a recent analysis by the Center for Economic 

Policy Research, employment rates among working- age adults with disabilities dropped 

from 31.4% in spring 2019 to 28.1% in spring 2020.41 During the 2007– 2009 recession, 

workers with disabilities were much more likely than those without disabilities to lose 
1272 COVID‐19 related disability needs

their jobs, and many left the labor force entirely,42 leading to a surge in applications 

for federal disability benefits such as Social Security Disability Insurance (SSDI) and 

Supplemental Security Income (SSI).43,44 In the current and more severe economic 

crisis triggered by the COVID-19 pandemic, we should expect similar patterns of 

high unemployment and increased demand for public benefits, and researchers must 

monitor this trend and evaluate policy and program interventions intended to return 

adults with disabilities to the workforce.

Study limitations. National Council on Independent Living estimates that 403 CILs 

are currently operating in the U.S., but there is some overlap in this count. Specifically, 

branch facilities in a network may be counted as separate CILs, though they are run by 

a single administrative unit. Consequently, it is likely that some surveys describe more 

than one CIL, and we cannot provide a precise response rate for this survey.

Conclusion. The U.S., and the rest of the world, faces a long and challenging effort 

to ameliorate the social and economic consequences of the pandemic, and to develop 

new and more resilient institutions to weather the next crisis. COVID-19 has reminded 

all of us about the critical importance of personal relationships with family, friends, 

and colleagues. We call for kindness and solidarity within the health research community, and a renewed commitment to working in full partnership with people with 

disabilities and those who support them.

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