Developments in Neuroethics and Bioethics - Chapter 9: The impact of the COVID-19 pandemic on people with neurodevelopmental disabilities and their families

The COVID-19 pandemic affected all people to some degree; however, individuals with neurodevelopmental disabilities (NDDs), such as autism and intellectual disability, were disproportionately impacted. For example, people with NDDs were at greater risk of contracting and dying from COVID-19 and experienced worsened mental health due to the implementation of various physical distancing restrictions. At a time when services were crucial, the supports that this population relied heavily upon were abruptly suspended or moved to an online delivery model. As a result, caregivers and siblings of people with NDDs were expected to take on multiple roles (e.g., health provider, navigator, educator, etc.) which resulted in burn out, increases in stress and anxiety. The challenges experienced during the pandemic should not overshadow some of the positives people with NDDs and their family members experiences such as such as being able to spend more time with family. The current chapter provides an in-depth review of how the COVID-19 pandemic, and subsequent physical distancing measures, impacted people with NDDs and their family members. This chapter is divided into five sections. Section 1 provides a brief background on NDDs including service access and utilization patterns for people with NDDs. Section 2 describes the impact of the pandemic on people with NDDs and their family members. Section 3 focuses on the positive impact of the COVID-19 pandemic on people with NDDs and their families (e.g., parents and siblings). Section 4 describes the various supports offered to people with NDDs and their families during the pandemic. Finally, Section 5 concludes with a discussion around neuroethical implications, as well as future considerations. It is critical that individuals with lived experience, researchers, policy makers, and service providers continue to explore and reflect on the COVID-19 pandemic and its implications to better support people with NDDs and their families.