Effects of the COVID-19 pandemic on college students with intellectual disability

1Introduction

As a global health crisis, the Coronavirus Disease 2019 (COVID-19) has impacted all societal sectors. The Centers for Disease Control and Prevention (CDC, 2020) stated that COVID-19 most likely spreads through airborne respiratory droplets among people who are in close contact with one another in enclosed spaces over an extended time. Due to the increasing likelihood of contracting the COVID-19, countries worldwide have required residents to shelter in place and restrict their exposure to the outside communities and expand the use of technology to provide social distancing for communication with non-immediate family and friends. According to the World Health Organization (WHO, 2020a; WHO 2020b), COVID-19 has given rise to “ ...  economic and social disruption ...  ” for adults. Along with financial security instability and social disruption, other Quality of Life Domains (QOL) including employment, physical health, psychological well-being, level of independence, social relations, environment, and spirituality/religion/personal beliefs (WHOQOL: Measuring Quality of Life, 2020c). These domains have significantly been affected for adults with intellectual disabilities (ID).

In recent years, adults with ID have increased their productivity within the above domains, based on support structures and resources for this population’s needs that may increase their independence and longevity. The successes mentioned above of adults with ID require determination and hard work from the individual, but often supports and services are provided by various community agencies. Transition-aged (16–21) adults with ID typically require a high level of support to succeed in the primary life domains. In contrast, young and middle-aged adults need lower support levels (Shogren et al., 2016). Obtaining and maintaining competitive employment continues to be one of the biggest challenges facing adults with ID. Studies have indicated the need for quality of life services for this population, especially in employment, suggesting that compensatory and natural support such as employment specialists, mentors, and technology supports increased the likelihood of an adult with ID to secure successful competitive employment (Wehman et al., 2003). However, when supports and resources are scarce and depleted, the effect can worsen for adults with ID particularly when the support structures are considered significant for this population.

The COVID-19 pandemic may be a once-in-a-century event; however, adults with ID have certainly endured other disasters during the past decades. Commonalities to the hardships faced during the pandemic can be found in the experiences of adults who survived the impact and aftermath of Hurricane Katrina. Researchers found that adult survivors of Hurricane Katrina encountered extended difficulties accessing services such as transportation, healthcare, and communication (Stough et al., 2010). It was also noted that adults with ID had increased hardships securing competitive employment during the hurricane’s aftermath (Stough et al., 2010). Study participants self-reported suffering from depression that they had not experienced before the hurricane. Case managers found that the support needed by adults with ID during the extended recovery effort (2 years after the crisis event) was more numerous and intensive than supports needed by survivors without ID (Stough et al., 2010).

It is expected that adults with ID may be more affected than their typical peers. Adults with ID face a shortage of supports and resources even during the best of times. Even when these services do exist, they are often loosely coordinated and challenging to access. Natural disasters have been shown to exacerbate these issues. According to Stough and colleagues (2016), a lack of ongoing concrete resources following Hurricane Katrina likely slowed the recovery for adults with disabilities. Of greater impact, an abundance of services and supports utilized by this population closed due to the COVID 19 virus (The Council of State Governments, 2020). Some examples of these governmental agencies and services include home and community support and services and access to education, information, steady employment, and, if needed, healthcare (The Council for State Governments Center for Innovation, 2020).

The effects of isolation during COVID-19 can have an impact on adults with ID resilience and self-determination skills. Boyle et al. (2020) conducted a study and found that before Hurricane Katrina, participants in the study developed resiliency strategies for employment and natural supports to assist adults with ID within the community without those skills. These strategies and natural supports include specialized transportation, specialized services to assist with daily needs, and advocacy groups’ support. Several of these resiliency strategies could potentially be implemented and enhanced when necessary during the COVID-19 pandemic.

Due to the contagious nature of COVID-19 all individuals were required to self-quarantine from all non-cohabitants causing an increase in social distancing and socialization through video conferencing platforms to communicate with others. De’, Pandey, and Pal (2020) share that adults without ID have the knowledge and experience of using virtual platforms and utilizing these skills to maintain social relationships throughout the pandemic. However, if adults with ID are not taught and do not apply these technological skills, this may lead to limited socialization. Adults with ID were already more isolated than their peers, and the pandemic will likely intensify that isolation (Constantino et al., 2020).

During the pandemic, businesses in several states had to close their doors unless considered an employer of essential workers (e.g., hospital staff, public safety, first responders, and transportation). As a consequence of shuttering businesses, employers and employees alike remained uncertain about the short-term and long-term economic outcomes for adults, businesses, communities, cities, states, and nations (Altig et al., 2020). For adults with ID who were not regarded as essential workers or had the option of working remotely, they too found themselves unemployed and awaiting word to return to work. Health concerns also affected adults with ID returning to work. Individuals with Down Syndrome, Fetal Alcohol Syndrome Developmental Delay, or Prader-Willi Syndrome are more likely to not return to work due to health matters such as severe mobility impairment, seizure disorders or epilepsy, vision and/or hearing impairments, and other health ailments due to premature mortality (Simpson, 2015). These events will likely further exacerbate the unemployment rate for adults with disabilities.

A study examining the experiences of adults with ID in postsecondary education (PSE) programs within the U.S. identified supports such as transitioning to employment, opportunities to interact within the college setting with natural supports, and attitudes and awareness that has assisted in embedding the typical college experience for their atypical peers as necessary support elements (Dowrick et al., 2005). As these categories have decreased for this population in person due to COVID-19, providing these supports virtually can be a daunting task.

Moreover, due to financial stress, approximately one-third of the students reported that their living situation changed due to the pandemic (Healthy Minds Network, 2020). One study found that students also shared a 31% average reduction in their wages; 40% of the students indicated the loss of a job, internship, or job offer, and 61% shared the loss of income of family member (Aucejo et al., 2020).

Furthermore, the Student Experience in the Research University (SERU) Consortium at the University of California-Berkeley found that due to COVID-19, undergraduate, graduate, and professional students without ID lacked the motivation to maintain and/or improve course grades, decrease in the opportunity of face-to-face communication and dissatisfaction of transitioning remote online courses (Soria et al., 2020). In a similar study from a large university in the southwest, postsecondary undergraduate students without cognitive disabilities made decisions to delay their graduation, withdraw from classes, or switch majors due to COVID-19 and its’ financial impact (Aucejo et al., 2020). It is important to note that these studies mentioned were of typically developing adult students. The lived experience findings of the impact of COVID-19 on adult students may have left out an important subgroup; adults with ID. For adults with disabilities, this is compounded by the concern that adults with disabilities are often the last group of people to potentially return or seek new employment with adults with ID impacted moreso (Erickson et al., 2014).

Perspectives from adults without ID have been shown to provide information on potential ways to aid; however, perspectives on COVID-19 for adults with ID should also be examined to consider supports and resources that can be implemented for this population. This study will answer questions related to the impact of COVID-19 on adults with ID by answering the following research questions:

2Methods

3Findings

The data collected was analyzed and organized into four major themes (e.g., employment, daily living, social, and well-being.) Each major theme was then divided into sub-themes creating a total of eleven sub-themes. There was a great deal of similarity between the current student group and the graduated group’s responses. However, some themes and sub-themes were mentioned more often by one group than the other. Table 3 displays the quotes of participants organized by theme and subtheme.

4Discussion

This study aimed to discover and share the impact of the COVID-19 pandemic on adults with ID. All participants in this study are attending or have graduated from a PSE at an IHE. The results show that participants were impacted in the employment, independent living, and social-emotional domains. The fact that all participants had intense and direct instruction in the areas of self-determination and technology before the start of the pandemic may have provided them an advantage over adults with ID who had not participated in higher education.

Regarding employment, participants were impacted in various areas. Some chose to delay all employment-related activities until the pandemic concludes. Others used the time in quarantine to learn new work-related skills. Participants already employed adapted to new health and safety procedures in the workplace. The variation in effects may partly result from where any given participant was in the employment process. Those already employed were willing to make the necessary changes required to maintain employment.

The daily living domain was also impacted, for the majority of participants reported taking on both increased responsibility in their homes and increased levels of worry and stress. These increased responsibilities and concerns likely led to the unintended central theme of well-being discovered during data analysis. Participants shared their strategies for both physical and emotional well-being.

All participants reported significantly decreasing or eliminating in-person social activities. However, participants switched many of their previous activities from in-person to virtual and even began engaging in some new activities utilizing virtual platforms. Participants were often the ones initiating and coordinating the above-mentioned virtual activities. This is likely connected to the overwhelmingly common theme of missing everyday life. Participants overcame obstacles and utilized problem-solving skills to connect with familiar people and activities during these unfamiliar times.

Findings in this study can be correlated to the importance of adults with ID developing self-determination. That can be observed in the broad range of outcomes. Additionally, adults with ID are often left out of the literature when research topics begin to diverge from special education. These adults deserve to have their voices shared during this unique and defining moment in history.

Participants expressed a variety of changes related to work settings and job searchers. Continued progress toward successful, competitive employment can be made by vocational coordinators, job coaches, and employers reaching their clients and employees with ID to determine any additional supports that may be needed due to the COVID-19 pandemic. Stough & Sharp (2010) expressed that support for adults with disabilities is essential to be more in-depth and continue for an extended time during a crisis.

The most prevalent theme shared by numerous participants was worrisome. Therefore, it is strongly recommended that adults with ID are provided the necessary mental health resources required to manage stress and anxiety during a crisis, which creates worry and isolation (Boyle et al., 2020).

5Implications for practice

The findings of this study indicated reevaluating supports and resources for adults with ID in unforeseen historical events. Modeling and applying supports such as teaching technological skills via in-person and virtually may decrease the difficulties of transitioning from in-person supports to virtual vocational rehabilitation and supports and resources from a PSE program. Colleges and universities can support adults with ID by providing instruction in technology to assist with virtual connections. This study’s present findings suggest that adults with ID would benefit from additional specialized, temporary support from universities, employers, and community agencies. Employers should also explore flexible work options for their employees with ID. Community agencies such as Vocational Rehabilitation and Agency for Persons with Disabilities can assist adults with ID in connection to and paying for mental health services related to developing coping strategies. These strategies will assist adults with ID to build resilience against the pandemic’s effects (Boyle et al., 2020). Support providers for this population must evaluate the requisite areas that adults without ID can navigate to adjust and/or modify avenues and circumstances that may arise during and after unforeseen events. These requisite skills should be taught with needed supports to adults with ID. Service providers and other care providers should also implement proactive procedures that will be beneficial to this population. These procedures may include, but not limited to, assessing employment and communication deficits that are necessities and will need to be taught and applied through contrived and spontaneous situations. For example, if the client has difficulty using video conferencing to communicate needs to an employer, a visual and/or written task analysis with a certain measure on gaps within this area. Once the client has met the suggested criterion measure that was set, opportunities for maintenance and generalization must be established with continuous progress monitoring of the process and the provision of extraneous supports e faded or eliminated when the objective is fully demonstrated. Also, using natural environment supports to illustrate executive functioning skills such as self-regulation and self-monitoring skills that can be used in the workplace is needed for generalization and can be less stigmatizing (Dowrick et al., 2005; Erickson et al., 2014). Preparing the client for impactful changes that may affect their probability of employment or maintaining their job may decrease the client’s frustration and anxiety (Constantino et al., 2020; Peek & Stough, 2010).

6Implications for research

A replication of this study is recommended to determine the impact of the COVID-19 pandemic on adults with ID who have not attended this IHE. The conditions of the study can be easily recreated with various participant groups. A comparison between the impact of the COVID-19 pandemic on adults with ID and adults without ID would also add to the literature, examining other supports and resources that were not addressed in this study.

7Limitations and future research

First, all participants were graduates of or current college students in similar PSE programs within an IHE. However, this study does not focus on other COVID-19 during and after-effects from other PSE programs or community programs that cater to adults with ID. Although efforts were made by the researchers to promote diversity in the focus groups, generalization beyond this population is not yet known. Second, participants in this study had an abundance of opportunities to demonstrate their PSE program’s technological capabilities with decreased technical issues. This could be a limitation for adults within this population who are not proficient in technology and video conferencing software. Third, not all participants were employed or employed, making it difficult for some participants to elaborate on their employment experiences and COVID-19. The familiarity of the researcher and notetaker may contribute to the participants’ willingness to answer questions in-depth. The willingness to elaborate on questions may not be the instance for a focus group with an unfamiliar facilitator and notetaker.

8Conclusion

When determining designated supports and resources during an unplanned historical event, all populations need to be considered in the planning, including adults with ID. Adults with ID face the same challenges as their peers without disabilities. However, those with ID are more likely to need intensive, extended supports to recover from unplanned societal events.