How COVID-19 impacted people with disabilities: A qualitative study in Delaware

Abstract

Objectives

The COVID-19 pandemic created unprecedented challenges for people with disabilities and their caregivers and service providers. An assessment of how the COVID-19 pandemic, and the public health response to it, inequitably impacted the health and well-being of people with disabilities is needed to improve preparedness for future public health emergencies. Interviews were conducted with the goal of documenting the impacts of COVID-19 on community-dwelling individuals in Delaware.

Study design

Qualitative interviews using a structured interview guide.

Methods

In November and December 2022, interviews were conducted with individuals with disabilities, their caregivers, governmental and non-profit service providers, and elected representatives in Delaware. Interviews focused on obtaining information related to COVID-related threats to maintaining good health, affordable and accessible housing, work, educational opportunities, transportation, and community belonging during the pandemic. Interview transcripts were inductively analyzed.

Results

Five themes were identified including changes to, or loss of, home-based medical and other services, changes in daily routines that impacted access to work and education, limits on access to transportation, financial strains and housing issues, and mental health concerns.

Conclusions

The COVID-19 pandemic impacted nearly all aspects of the lives of people with disabilities. COVID-19 presented long-term, existential threats to progress made toward independent living, meaningful work, and financial, health, and educational equity for people with disabilities.

1. Introduction

The COVID-19 pandemic created unprecedented challenges for people with disabilities, their families, and their care and service providers. The Centers for Disease Control and Prevention (CDC) identifies people living with disability to be at higher risk for severe illness due to COVID-19 because of underlying medical conditions, living in congregate settings, or systemic health and social inequities [1]. These existing inequities experienced by persons with disabilities have been exacerbated over the course of the pandemic and the resulting public health response. For example, inadequate systemic adaptations to public health rules and regulations contributed to the loss of already scarce services, increased dissatisfaction with services that were still available, and necessitated shifts to telehealth and other virtual services even when those adaptations were neither effective nor supportive of people with intellectual and developmental disabilities (IDD) [2].

Many people with disabilities rely on support from family members or direct support professionals in their daily lives. Accessing these support resources was difficult during the pandemic, since it often meant increased contact with others and potentially increased exposure to COVID-19. In one study that asked how COVID-19 affected access to in-person educational and healthcare services, 74% of caregivers for adults with IDDs reported losing some educational or healthcare services [3]. The early lockdowns and periods where restrictions included non-pharmaceutical control measures such as stay-at-home orders and closures of non-essential services were among the most difficult for people with disabilities and their caregivers [4]. For example, without frequent and reliable access – particularly to education and welfare systems – families were left performing intensive caregiving for children with disabilities while juggling additional roles [4,5]. Without connections with their usual support systems, families lost access not only to healthcare and other types of practical supports but also lost access to social networks, which contributed to family tensions [5]. However, some families also reported positive outcomes associated with these restrictions, such as stronger sibling relationships and increased parental competency for advanced and specific caregiving needs [4].

Stress, fear, and anxiety around exposure to COVID-19 were serious concerns for persons with disability and their families. Those with chronic conditions, especially immunodeficiencies and disabilities, had the highest levels of fear and anxiety as these conditions increased the likelihood that a person infected with COVID-19 became severely ill [6]. Increased risk of severe illness meant that many people with IDDs were limited in or unable to access necessary screenings, treatments, and supports. As the pandemic progressed, both parents and children reported increasing levels of concern for a range of factors, including lack of social interaction, loss of ability to approach others, family conflict, and loss of institutional support [7]. Parents and caregivers of young children with disabilities reported high levels of stress and more concerns about the impacts of COVID-19 related interruptions to childcare on their child(s)’ development compared to parents and caregivers of children without disabilities [8]. While facing a range of stressors, families have also reported resilience building factors, such as increased parental efficacy and adaptive family dynamics [9].

Staying healthy during the COVID-19 pandemic also required access to COVID-19 information, testing, and vaccines. Drive-through testing sites were a concern for many people with disabilities who either do not drive or do not have access to a car. Lack of COVID-19 information pertaining to the disability community and how the pandemic may affect them due to their specific disability was also a concern [10]. While communication and trust were cited as a key strength of community organizations providing services to people with disabilities during COVID-19, online services and social distancing were both noted as reasons that communication between organizations and clients were inadequate during the pandemic [[11], [12], [13]]. However, community services for persons with disabilities did adapt their programs and were able to continue providing support by offering additional types of preventive healthcare services, new modalities for programs (e.g., online and hybrid), and training and technical support for clients that supported their ability to engage with ongoing activities [14].

Social distancing as a COVID-19 prevention measure had a profound effect on how communities were able to interact. Using personal outcome measure interviews with persons with IDDs, researchers assessed how quality of life outcomes changed between 2019 and 2020. In 2020, people with IDDs were less likely to interact with other community members and less likely to have intimate relationships with others. Between the increased threat of infection with COVID-19 for people with IDDs and the decreased opportunities for participation in the community due to social distancing, the pandemic left many people with IDDs isolated. Many congregate living settings also stopped allowing visitors and implemented sheltering-in-place, causing even those in community living to be isolated from not only outside visitors but also their peers [15]. Prior research has identified negative mental and physical health outcomes among aging parents living with adult children with IDDs [16]. During the COVID-19 pandemic, these aging caregivers faced a sort of double jeopardy as they tried to protect their own health while maintaining needed connections to medical care and other services for their adult children with IDDs [17].

The COVID-19 pandemic also posed increased economic and financial challenges for many, including people with disabilities, who were already likely to be living in poverty and lack access to employment opportunities before the pandemic. These problems were intensified by the pandemic and the public health response to it, which further disadvantaged the people with disabilities in the job market [18]. Job loss and salary cuts in the pandemic caused increased financial stress on those with disability during the pandemic, and even those that remained employed feared losing their jobs [18]. Because a large share of insurance is employer-based, job loss can also contribute to the loss of access to health insurance and healthcare for people with disabilities [19].

Much of the data available related to the impacts of COVID-19 on people with disabilities in the State of Delaware is limited to those living in long-term care facilities or those who utilize Division of Developmental Disabilities Services (DDDS) residential habilitation services [20]. However, more than three-quarters of the people that use DDDS services reside in family homes. Therefore, more data are needed about the COVID-19 experience of all people with disabilities in Delaware – not just those in long-term care facilities or group home settings – to understand how the pandemic and the state’s response to it impacted Delawareans with disabilities. To address this gap, we conducted a qualitative case study, interviewing key informants to identify 1) threats to health and wellbeing that the COVID-19 pandemic and public health response created or exacerbated for the disability community in Delaware and 2) areas with shortcomings in the public health response to COVID-19 for the disability community. Identifying these threats and shortcomings can help public officials understand how to include the disability community’s specific needs and improve preparedness for future public health emergencies.

2. Methods

Respondents were identified by the Delaware Developmental Disabilities Council (DDC), which by Federal law includes “individuals with developmental disabilities, parents and guardians of children with development disabilities; and immediate relatives or guardians of adults with mentally impairing developmental disabilities who cannot advocate for themselves” (ddc.delaware.gov). A subgroup of the DDC, the Workgroup on the Social Determinants of Health, provided contact information for partners and other stakeholders, including people with IDDs, their caregivers, governmental and non-profit service providers, and elected representatives in Delaware. Potential respondents were contacted by email by a university faculty member and graduate student once a week for three weeks to schedule an interview using the Zoom video communications platform (San Jose, California).

Interviews were scheduled at a mutually agreeable time between November 3 and December 21, 2022. Upon receiving verbal consent, the interview team took thorough notes and confirmed them with Zoom transcripts stored on a password protected University server. An interview guide (Supplemental Material) was developed based on the individual capacity assessment for public health emergencies described by Hu, Rao, & Sun [21]. Interviews were focused on obtaining information regarding Strengths, Weaknesses, Opportunities, and Threats to maintaining good health; accessing affordable and accessible housing, work, educational opportunities, and transportation before and during the COVID-19 pandemic; and a sense of community belonging during the pandemic. All materials were reviewed by the [blinded for review] and determined to be exempt. Notes from interviews and transcripts generated by Zoom were inductively analyzed by the two members of the interview team simultaneously to identify themes, which were then triangulated. Coding continued until saturation was achieved and no new themes emerged, which resulted in categorization of data into five themes [22].

3. Results

Of the 25 key informants and stakeholders contacted to participate, 13 completed an interview during November and December 2022 for a response rate of 52%. Participants included people with disabilities (n = 5), parents of children with disabilities (n = 6), service providers for people with disabilities (n = 1), and elected governmental representatives (n = 1). Five themes were identified via inductive coding: changes to, or loss of, home-based medical and other services, changes in daily routines that impacted access to work and education, limits on access to transportation, financial strains and housing issues, and mental health concerns.

3.1. Changes to, or loss of, in home-based medical and other services

Most participants noted a change in or loss of their access to both home-based and facility-based medical services. For many people with disabilities, home-based assistance is integral to their independent living, and without assistance, people were left unable to live safely or comfortably. These issues have persisted throughout the course of the pandemic, as noted in the experience of a participant,

People who needed attendants to come in to help them … they wouldn’t come to your house so you maybe cannot get out of bed, get back in bed, or get anything to eat. The attendants wouldn’t come post-COVID and so people ended up in a nursing home.

Along with home-based care, medical equipment shortages affected those that use medical equipment at home.

People with back-up ventilators would lose them because they would come in and remove them. We didn't have filters or circuits. We couldn't change any filters or circuits until we got new ones. Still to this day, there are shortages. Portable concentrators are on backorder. We are still suffering the consequences of not being prepared for a pandemic.

Participants also mentioned their medical offices having less in-person availability and telehealth becoming a more frequent mode of healthcare. Participants highlighted the positives of telehealth, including convenience and accessibility. However, participants also noted that in-person appointments provided more peace of mind, and that many therapies were not as effective virtually as with in-person care.

An overarching sentiment among participants when discussing the changes in access to services is that the disability community was being overlooked in response to the pandemic. Participants mentioned feeling as though public officials did not even know that there were people in Delaware relying on home-based care services or at-home medical equipment. A Delawarean who utilizes at-home medical equipment shared,

I actually contacted the governor's office to see what back up plan they had in place for people with ventilators and medical equipment. The person that was in charge of that didn’t even have any idea that there were actually people in the community that have ventilators in their homes. The lack of knowledge of the people in leadership and in positions to protect vulnerable people … they are not very knowledgeable.

The unique support needs of the disability community were compromised during the COVID-19 pandemic. At-home care and medical equipment that ensure safe and independent living for people with disabilities became more difficult to access and more healthcare providers turned to telehealth. Ensuring continued access to these types of essential services and care during a public health emergency requires those in leadership to have knowledge of, and plans to meet, the specific needs of the disability community.

3.2. Changes in daily routines that impacted access to work and education

Six of 13 (46%) respondents had school aged children. When schools switched to a virtual platform it had major effects on children with disabilities and their families. Schools provide one-to-one services and therapies needed for children with disabilities, and these were mostly lost with the transition to virtual school. As children were doing school from home, parents had to become an at-home classroom support, sometimes leading to the parents working less or not at all. One parent noted,

The 1 to 1 with paraprofessionals and teachers became a critical issue because the parents had to become that, but at the same time the parents had to work and provide, so the struggle of adding another [role] to … the parents in the household became a challenge.

Participants also mentioned how school also provides children with disabilities a social support system, which was lost with virtual school. Many parents of children with disabilities were fearful of their children becoming exposed to COVID-19 since the effects were largely unknown for those with diagnosed IDDs. Virtual schooling also came with financial and accessibility challenge, including wireless internet and other technologies. As one participant noted, “education doesn’t stop just because you don't have the ability to be a part of it.”

Similar to school closures, day programs for adults with disabilities were closed, leaving adults with disabilities with nowhere to go and their caregivers with added responsibilities during the day. One participant mentioned that young adults with disabilities transitioning out of high school during the pandemic had significantly fewer opportunities for employment due to COVID-19 related closures. Participants also mentioned job loss due to COVID-19-related closures, for both people with disabilities and their caregivers, or jobs moving to a virtual platform, which required adapting to even more new technologies. Those still working in person also had to deal with the trade-off of needing to go to work to make money while feeling that being at work was potentially exposing them and their families to COVID-19. Many of these changes were abrupt or fluctuated across periods when infections with COVID-19 surged and control measures were reinstated. These frequent changes also took a mental toll on both people with disabilities and caregivers.

Overall, families with school-aged children had to adjust their daily routines when schools closed and parents or caregivers were required to take on a classroom support role for virtual learners. School-based therapies and social interaction with peers was significantly reduced or completely lost. Certain groups, like young adults transitioning out of high school, had particularly limited opportunities for work, the impacts of which may carry across many years due to lost wages and experience.

3.3. Limited access to transportation before, during, and after COVID-19

Most participants mentioned that transportation for the disability community was an issue before COVID-19, with the pandemic exacerbating the exiting problems in Delaware’s paratransit system. The Delaware paratransit system consists of a fixed route bus, with stops that may not always be easily accessible to people with disabilities. Scheduling issues and longer travel times were exacerbated by the pandemic restrictions as well as bus driver shortages. Respondents noted that transportation issues created new barriers for those with disabilities to get to work, appointments, or grocery stores.

[Paratransit] was already probably understaffed for the services they provide … The schedules and the distance from point A to point B, where it normally takes 4 hours, it’s now taking longer. People with diagnosed conditions can be on that bus from 1 to 4 hours and be in a local area … Some people use DART [Delaware Transit Corporation, the State’s only public transportation system] to get to the grocery store. We don’t have a good transportation system for people with disabilities. The ability to get food, transportation to medical appointments, it was all limited by the fear of being on the bus because of COVID being there.”

Alternative transportation methods, including buying an accessible vehicle or using ride-share services, are often costly and impractical for people with disabilities. The pandemic highlighted the already existing need to create a more accessible, affordable, and reliable transportation system for people with disabilities.

3.4. Financial strains and housing issues

As mentioned, job loss or reduced hours were concerns among many participants. These increased financial strains affected the daily lives of those with disabilities and their caregivers, including exacerbating financial and housing issues already facing the disability community. The State of Delaware is facing increasingly high rent prices and a housing shortage, and people with disabilities are feeling the effects. State housing for those with disabilities is difficult to obtain, with long waiting lists and a complicated application process. A service provider shared,

I still have someone with a mental health disability on the State’s housing waiting list - [they]’ve been there for 4 years. There is definitely a problem with housing in general - a shortage of housing and rentals overall, and people with disabilities have less income in general, so they don’t have access. There’s no one point of entry - you have to get on multiple lists.

Financial strains during the pandemic had direct effects on the health and wellbeing of those with disabilities. Accessing doctors’ appointments, therapies, school, or work required enough money to pay for a high-speed internet connection and the technology to use it. One participant noted that being at home and being required to do things virtually increased their utility bills. One participant reflected on having to prioritize needs:

The internet bill was something I had trouble with - if you get a certain amount of money each month. What’s more important? Internet or food? Or rent?

Increased housing concerns and financial strains during the COVID-19 pandemic affected many aspects of the lives of people with disabilities. Increasing rents and shortages of rental units priced people with disabilities out of the limited housing options that were appropriate, exacerbating problems that were present before the pandemic. Access to high-speed internet and other technology was often a financial strain. Yet without it, access to education, healthcare, and work were nearly impossible.

3.5. Mental health concerns

The pandemic caused increased stress and anxiety for many people in the disability community. Fear of exposure to COVID-19, grief, loss, and bereavement of friends and family who died from COVID-19, a lack of appropriate communication or acknowledgement from public officials, financial strains, and changes in daily routine and access to medical care all impacted the mental health of people with disabilities in Delaware. For those who rely on at-home care to live independently, the tradeoff of potential COVID exposure to simply get out of bed or eat had an extremely negative impact on mental health. A unique threat faced by persons with disabilities during the pandemic that impacted mental health was the loss of independent living. Without access to needed at-home care, independent living became less feasible, causing deterioration of mental health and necessitating changes in living arrangements. Threats to mental health and well-being were reflected by a participant,

What if your attendant saw you and then two others - then all their contacts are now yours. It is hard to wrap your head around how taxing all of that was when we were so panicked and we didn’t know enough about how COVID would affect this population and that is really hard as a mom, but much harder as a disabled adult or a child. The one person who provides you care is exposing you.

Those living in group-based settings were unable to leave or have visitors, increasing feelings of isolation. Housing concerns among people with disabilities were exacerbated, and often housing took priority over other issues.

The thought of eviction plays on the mental aspect- where am I going to go? Food, clothing and shelter are our primary needs. If you’re worried about shelter, a whole lot of other things snowball downhill as far as mental concerns and stresses

Many participants noted that a number of these different factors affect one another. Living independently as a person with disabilities means relying on home-based care attendants for basic needs or on paratransit to get to where one needs to go. The loss of these services is detrimental to the health and wellbeing of people with disabilities. Without access to home-based care, those with disabilities end up relying on family members or living in different facilities where they can get daily care. Poor access to paratransit means the inability to get to work or doctor appointments, affecting one’s financial independence and health.

4. Discussion

The social determinants of health - education, community, built environments, healthcare access and more - are now widely accepted as an integral part of health outcomes for everyone. For people with disabilities, the inequitable deterioration of these determinants during the COVID-19 pandemic had wide-ranging negative impacts on health and well-being. Decreased opportunities for meaningful work, as well as challenges to accessing education, housing, transportation, and social support networks for people with disabilities were exacerbated by the impacts of COVID-19. For example, already limited transportation options became even more restricted for people with disabilities during the pandemic due to driver shortages and physical distancing requirements that limited capacity, which increased isolation and reduced ability to access medical appointments and other essential services. The crisis in affordable and accessible housing, already critical prior to the pandemic, intensified, with U.S. Census data reporting people with disabilities having increased housing insecurity during COVID-19. These impacts were viewed as harming certain subgroups of people with IDDs more significantly, including those just completing high school and other young adults preparing to start an independent life. In addition, much remains unknown about the long-term risk of these challenges given the limited understanding of the future impacts of COVID infection among people with disabilities or the potential for long-COVID and COVID acquired disability to disrupt future access to education, employment, and healthcare [23].

Similarly, much has been written about the mental health impacts of the COVID-19 pandemic on a number of groups, including frontline healthcare workers and other occupational groups. Among adults with disabilities, research has demonstrated worsening mental health during the pandemic including stress, isolation, and anxiety, particularly among those with preexisting mental health conditions [24]. Disability-related discrimination and precarious employment became more prevalent among people with disabilities during the COVID-19 pandemic, driving higher rates of depression [25]. Financial insecurity, an inability to maintain healthy lifestyle behaviors, the death of a loved one, isolation, and family tensions were among the factors that increased risk for depression, anxiety, and post-traumatic stress disorder among the subset of the disability community with chronic illnesses [26]. In this study, in response to a general question in the key informant interview guide related to sense of community belonging, many respondents focused on the heavy toll of the pandemic on the mental health of people with disabilities. Respondents specifically cited a fear of infection that prevented interactions with those who were sick, even those that were terminally ill, and the inability to grieve or attend funerals. Caregiver burdens and potential mental health impacts should also be considered; disruptions in access to supports, services, and care coordination, often due to fear of contracting COVID-19, left families isolated, but may have helped to build resilience for future emergencies [27,28].

4.1. Limitations

This research has several important limitations. The use of disability as a category in the health or medical context is likely far too large to understand the diverse and disparate experiences of the approximately 1 in 4 people in the U.S. with some type of disability during the COVID-19 pandemic [29]. The overall sample size was small and limited to a single U.S. State and a single service provider and elected representative. Contact was only made via email using contact information provided by the Workgroup on the Social Determinants of Health. Therefore, people who did not use email would not have been able to participate, although participants for subsequent focus groups were recruited via printed flyers, social media, and text messages. Although respondents represented people with IDDs, their caregivers, service providers, and policymakers, any findings are not necessarily generalizable. Although two of Delaware’s three Counties are predominantly rural, and people with disabilities in rural areas are more likely to face barriers related to access to work, education, transportation, housing, and healthcare [30], we did not specifically collect information related to rural/urban characteristics of respondents and thus cannot compare or contrast their reported experiences. Additionally, while cost and access to appropriate technologies needed to attend virtual school or healthcare screenings and treatments were frequently mentioned, we did not ask specifically about the use of augmentative or alternative applications or devices that are frequently used by people with disabilities, yet did not comply with technical requirements for telehealth [31].

5. Conclusion

There is little research available regarding how the COVID-19 pandemic and response affected those with disabilities in Delaware. Through these interviews, information was collected from key stakeholders in Delaware’s disability community about the impact COVID-19 had on their community. Although limited to Delaware and made up of a small sample of respondents, the themes identified here would likely be similar among people with disabilities living in other communities. In addition to these COVID-specific factors, much is already known about the systemic barriers and health and social inequities faced by people with disabilities on a regular basis. Therefore, applying lessons learned from the pandemic experience of people with disabilities to planning for future public health emergencies is both possible and vital to reducing inequities in public health preparedness.

Ethical approval

All materials related to this study were reviewed and determined to be exempt from human studies ethical approval by the University of Delaware’s Institutional Review Board (1966229)

Funding

Funding was provided by the Administration for Community Living (ACL), Contract DD-2202. The findings and conclusions in this report are those of the authors and do not represent the official position of ACL or the Delaware Developmental Disabilities Council.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A. Supplementary data

The following is the Supplementary data to this article: