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February 5, 2024

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National COVID Collaborative Cohort (N3C) Lifespan Disability Team Works Towards a more Equitable Healthcare for Persons with Disabilities

The National COVID Collaborative Cohort (N3C) Lifespan Disability (LD) team, a diverse group of individuals, represents a comprehensive spectrum of members, including service providers, patients, and family members of individuals with at least one reported disability. The primary aim of this specialized team is to examine and dissect the myriad ways in which the ongoing COVID-19 pandemic, along with the strategies and interventions designed to tackle it, have impacted individuals, with consideration for their unique abilities, functioning differences, and life trajectories.

Responses to public health events such as COVID are complex. Consider, for example, how an individual's vulnerability and reaction to the virus might be shaped by their previous experiences with the medical field, specific characteristics and assumptions of their disability, comorbid conditions, or accessibility and availability of resources in their area. Established literature consistently documents individuals with disabilities are hesitant to seek medical services. This hesitancy is associated with varied experiences when seeking assistance prior to the pandemic. These varying perceptions and reactions can be attributed to differing life experiences and perspectives, which are influenced by everything from a person's socio-economic background to the beliefs they hold dear. Similarly, a person's personal circumstances, such as experiencing barriers to access, or quality care could shape their understanding and reaction to the virus.

Research literature, as well as the popular media, documented health care decisions during COVID that were not always to the favor of those with disabilities. Medical rationing and social isolation in medical areas received specific attention through these channels. In some studies, these potential limitations to medical care were shown to create compounding stress and fear for individuals and their families while experiencing the pandemic. Individuals with disabilities, particularly those affecting physical movement, communication, or cognitive functions, face additional challenges in accessing quality healthcare. These obstacles are amplified during a pandemic. For instance, individuals requiring assistance might require a caregiver to assist with their medical needs, but due to social distancing measures, this assistance might not be possible, potentially resulting in health complications. Additionally, persons with disabilities often face specific barriers to accessing information, thus complicating their ability to make informed decisions about their health.

The COVID-19 pandemic has highlighted these existing disparities. However, the hope is that during this pandemic, the Lifespan Disabilities (LD) team can enact policies and programs to address these shortcomings and work towards a more equitable society. Our research questions and analyses examine previous experiences of individuals with disabilities in terms of access but also continued services over time.

Despite its relatively recent establishment, the lifespan disability team has already made impressive strides. The LD team has already embarked on creating a manuscript, which is in process, and is designed to establish comparisons of COVID infections, morbidity, mortality, and treatment access across three groups: those with intellectual and/or developmental disabilities, those with a traumatic brain injury, and a non-disability reported matched sample. The results of this study will help guide future examinations of other types of disability, comparison effects based on functioning differences, familial experiences, and more.

The lifespan disability team, with its diverse range of dedicated experts, represents a vital pillar in our collective understanding of the impacts of the COVID-19 pandemic on individuals with disabilities, their families, and the service providers who support them. Their efforts not only enrich our understanding of this challenging time but also lay the necessary groundwork for a more inclusive and equitable future.

To learn more about the N3C Lifespan Disabilities Team, visit https://covid.cd2h.org/disabilities. If you are interested in this type of research, please reach out to Lesley Cottrell at lcottrell@hsc.wvu.edu.

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Coordination, Communication, and Operations Support (CCOS) is funded by theNational Center for Advancing Translational Sciences, National Institutes of Health.

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