People with disabilities, community living, and COVID-19.

COVID-19 continues to disproportionately impact people with disabilities in the United States and globally. The accumulating body of evidence, including the many publications in Disability and Health Journal (DHJO), demonstrates the enduring impact of COVID-19 on the health and well-being of people with disabilities.

The current issue of DHJO includes seven additional articles that provide further evidence of the excessive burden of COVID-19 on disabled people. The pandemic continues to impact physical activity and sedentary behaviors, healthcare experiences, and mental health among people with a variety of disability conditions in the United States and across the world. Further evidence for disproportionate negative outcomes among people with intellectual and developmental disabilities (IDD) is again highlighted. Disparities in access and use of the internet have been amplified by the pandemic. And vaccine hesitancy among people with IDD and their family members and caregivers are low in New York State, supporting the Centers for Disease Control and Preventions publication reporting low vaccine hesitancy and low vaccination rates among people with disability in general, indicating possible access barriers.

Through these and prior publications, DHJO has been in the forefront of advancing empirical knowledge on COVID-19 and people with disabilities. However, there are significant gaps in our knowledge. While the devastating consequences of COVID-19 on people with disabilities, those living in nursing homes and some other congregate settings, and people of color have been an appropriate and important area of research, policy, and media attention, there has been scant attention to the effects and experiences of people with disabilities, particularly racial and ethnic minorities, living in home and community settings.

Since the early days of the pandemic, there has been ample anecdotal evidence pointing to the disruptions in care networks, scarcity of and inequitable access to personal protective equipment (PPE), the increased burden on paid and family caregivers and other direct care workers who support people with disabilities, and the higher levels of fatigue, mental health issues, and stress among disabled people and their caregivers living in community settings. The continued uncertainty of the future trajectory of the pandemic, labor force shortages impacting access to personal care assistance, inequitable access to vaccines, and barriers to telehealth, among other concerns, continue to devastate people with disabilities with long-term services and supports (LTSS) needs living in home and community settings.

While the current attention and proposed investments in home- and community-based services (HCBS) provide a much-needed opportunity to improve community-living supports for people with disabilities, there remains a gap in our understanding of the experiences and effects of the COVID-19 pandemic on people with disabilities living in group homes and other non-nursing home congregate settings as well as those living in individual and family homes. Our limited understanding partially stems from the lack of data – both survey and administrative – on working-age adults with LTSS needs. In order for state and federal policymakers to address the needs of people with disabilities with LTSS needs during this and future public health emergencies, we must systematically investigate the social, economic, and health impacts of COVID-19 among people with disabilities, particularly disabled people of color, living in the community.

The DHJO remains interested in empirically-based studies to better define the impact of the pandemic on people with disabilities, including studies that focus on the effect of the pandemic on people with disabilities living at home and in other community settings. Findings from these studies can be helpful not only during the present pandemic, but will be needed for future emergency planning. The DHJO Editors call for additional research focused on the pandemic-related impacts on the health and well-being of people with disabilities living in the community.