Impact of the COVID-19 Pandemic on the Behavioral Health of People With Intellectual and Developmental Disabilities

The Colorado Multiple Institutional Review Board determined that this survey-based study was exempt from human subjects review. A nationwide group of physicians and researchers who work with individuals with IDD collaborated to adapt and shorten the Coronavirus Health Impact Survey–Adapted for Autism and Related Neurodevelopmental Conditions (8). The final 78-item survey included multiple-choice, Likert, and free-response formats. Flyers and a web link to the survey were sent to patients and families through the authors’ clinical networks and to a variety of IDD-affiliated organizations across the country. Participants completed the survey from March to June 2021. Data were managed with research electronic data capture tools hosted at the University of Colorado, Denver (9).

Demographic items included age, gender identity, race-ethnicity, state of residence, living arrangement (e.g., with family or in a group home), developmental disability diagnoses, and coexisting mental health conditions. Respondents rated current mental and general medical health (poor, fair, good, excellent) as well as how symptoms had changed from before the pandemic to the time of the survey (worse, the same, better). Respondents noted whether medications to manage these symptoms were taken before the pandemic, whether medications had changed, and, if so, how the medications changed (added new, increased or decreased dose, or stopped). Participants explained how services and activities changed because of the pandemic. They selected from four options: “I continue to do this”; “I continue to do this, but less because of COVID”; “I used to do this, but now I cannot because of COVID”; and “I never did this.” They also rated how much they thought different interventions would improve behavioral health. To assess changes in activities of daily living brought about by the pandemic, participants selected “less,” “the same,” or “more” in response to questions about how much help was needed to get dressed, brush teeth, shower, or eat; difficulty sleeping; level of exercise; and time spent watching TV or looking at screens.

Statistical analysis was performed with SAS, version 9.4. All data and survey responses were analyzed on an available-case basis. Differences between overall responses about adult versus pediatric people with IDD were evaluated with a chi-square or Fisher’s exact association test. Spearman correlations were used to correlate losses of various services and activities with declines in mental health. Alpha was set to 0.05; because this study was meant to be descriptive and exploratory, results were not adjusted for multiple testing.

Three authors (R.S., M.R.A., R.L.I.P.) independently organized free-text responses into recurring themes. They analyzed responses to “Please share any other difficulties you have had since the COVID-19 pandemic” and “Please share anything else that would help you during the pandemic.” The reviewers removed responses, by consensus, that did not address the question, were uninterpretable because of brevity, or were otherwise nonapplicable. These themes were then compared side by side for each response; differing themes between the three authors were reconciled after group discussion. Themes were then rank-ordered by proportion of responses.

There were 437 survey participants from 32 U.S. states, mostly Colorado (44%, N=185 of 424) and New York (24%, N=100 of 424). Most respondents (84%, N=362 of 432) were caregivers answering on behalf of a person with IDD; 35% (N=151 of 426) of those with IDD were younger than age 18 (a table showing demographic information is available as an online supplement to this report). Missing data represent <5% of total responses, unless otherwise noted. When reporting developmental disabilities (respondents could list more than one), 51% (N=224 of 437) listed intellectual disability, whereas 48% (N=209 of 437) listed autism spectrum disorder. Smaller percentages of participants identified Down’s syndrome, cerebral palsy, hearing or visual impairment, and mobility impairment. Sixty-seven percent (N=292 of 437) of respondents reported coexisting diagnoses: anxiety (42%, N=184 of 437), depression (19%, N=84 of 437), obsessive-compulsive disorder (14%, N=61 of 437), and epilepsy (13%, N=57 of 437).

Of the participants, 52% (N=223 of 432) reported that the mental health of the person with IDD had worsened, whereas 24% (N=102 of 433) reported worsened general medical health. Changes in mental health did not differ when separate analyses were done for people with autism spectrum disorder versus those with other IDD and for youths versus adults. A large portion of survey respondents reported that maladaptive thoughts and behaviors had increased during the pandemic: 48% (N=205 of 431) reported more worrying, 56% (N=239 of 430) reported struggling with changes in routine, and 19% (N=80 of 429) reported worsening self-injurious behavior (see the online supplement). Moreover, 41% (N=178 of 434) reported weight gain, and 36% (N=153 of 431) reported difficulty sleeping (see the online supplement). Other effects included increased medication changes, decreased social time and exercise, and increased need for assistance with activities of daily living (see the online supplement). Qualitative analysis showed that the most common responses to “Please share any other difficulties you have had since the COVID-19 pandemic” were isolation, mental health difficulties, general medical health difficulties, behavioral regression, and inadequacy of services.

Participants rated different interventions that they thought would improve behavioral health on a Likert scale (Figure 1). Interventions rated as “would help very much” included more time with friends and family (68%, 285 of 422), more time outdoors (61%, 255 of 421), access to activities in the community (59%, 249 of 422), continuous access to a day program or job (52%, 209 of 401), fewer changes in support staff (47%, 191 of 407), access to behavioral therapy (42%, 171 of 406), and access to religious services (35%, 146 of 414). Qualitative analysis reinforced this finding, with the five most common themes in response to “Please share anything else that would help you during the pandemic” being access to services, social and community connections, physical improvement (including exercise), pandemic-related safety, and return to in-person work and social activities and to normal routines.

Our results demonstrate that the changes caused by the COVID-19 pandemic have affected the mental health of individuals with IDD. Individuals with IDD are often uniquely overlooked, partly because of difficulties with self-advocacy. More than half of the survey participants reported worsened mental health compared with before the pandemic. Although many people were able to engage in virtual social activities, fewer than one-fifth of the survey respondents felt that social needs were being met with the virtual options available at the time. Physical markers of mental health languished as well: many individuals with IDD struggled with sleep, weight gain, and declining general medical health and needed more assistance with activities of daily living. These declines in mental health correlated with loss of access to activities (see the online supplement).

Although we had not originally hypothesized that the pandemic would affect medication regimens, we found that about half of the individuals who were previously prescribed psychotropic medications required new medications or higher doses of their existing regimen. The strong correlation between loss of support services and worsening mental health can justify the treating clinician’s recommendation of services and activities in addition or possibly prior to pharmacologic interventions, but future investigation is needed.

It is interesting to note that 12% (N=52 of 432) of respondents reported improved mental health (see the online supplement). More work is needed to understand the factors contributing to this small group’s improvement. The results of this survey demonstrate the diversity of needs of people with IDD and emphasize the importance of individualized, person-centered care.

Although institutional service changes are challenging to implement, our data also point toward interventions for patients and caregivers that could improve mental health. Participants indicated that isolation and loneliness were some of the biggest problems they faced, similar to many populations during this pandemic (10–12). Many respondents noted that more time with friends and family and more time outdoors would help improve mental health. These activities, in pandemic-safe settings and with appropriate precautions, can be supported by the community in order to increase access to exercise and social activities. Although virtual activities can offer pandemic-safe venues for socialization and service delivery, acceptability and feasibility may differ among different age groups and by diagnosis (13). In future studies, researchers could identify new activities that patients have acquired as a model for how to proceed. It is our hope that families and community organizations can be empowered to act on these needs and that this undertaking can facilitate improved mental health of people with IDD.

One limitation of our study was the use of a convenience sample. The goal of the study was to reach a wide variety of patients with IDD and their families across the nation; the broad distribution did not allow for calculation of a response rate. The study’s large sample size represents a diverse population of individuals with IDD from 32 U.S. states and from a mix of rural, urban, and suburban communities (see the online supplement). However, the study’s respondents had a racial distribution similar to that of the population of Colorado, the state with the most responses, which is not reflective of the racial diversity of the United States (14). The geographic diversity also inherently added variability in the nature of COVID-19 restrictions experienced.

Another limitation of our study was survey self-assessment by proxy. Most survey respondents were caregivers of individuals with IDD, which can introduce bias. Thus, we do not know the level of input that individuals with IDD had on their caregivers’ responses, and their agreement with caregiver responses cannot be assumed. Levels of support needs were not queried, so the impact of COVID-19 may have been different for people with varied levels of impairment. An additional limitation is that the qualitative component was constructed on the basis of consensus rather than with independent rater methodology.

Finally, this study was descriptive and exploratory; we did not correct for multiple comparisons because we did not want to lose power for analyzing participant responses. In future studies, researchers could use hypothesis-driven analyses for factors with the strongest association (e.g., the relationship of mental health to social interaction with friends and family).

The nationwide limitations imposed to curb the spread of COVID-19 affected the mental health of the already underserved population of people with IDD. Most important, our data reveal the significance of community support as well as consistent activity funding and service delivery for people with IDD, even (and especially) during times of adversity and hardship. The potential positive impacts of physical activity and pandemic-safe social supports and opportunities should be regarded as important and accessible means to mitigate the overall gap in services.

The authors thank Morgan Avery for developing recruitment materials and helping with recruitment; Ron Calavito for helping with the survey pilot and recruitment; David Ervin for reviewing the initial survey, guiding distribution, and helping with recruitment; Wilfreda Lindsey for helping with recruitment; Donna Martin and Barbara Merrill for advising on survey distribution; Rick Rader for reviewing the initial survey; and Shea Tanis for guiding the preparation of the report.