This Cannot Be Ignored: People with I/DD Are Being Left Out of the COVID-19 Response

The COVID-19 pandemic has hit people with intellectual and developmental disabilities (I/DD) especially hard, according to Rebecca Monteleone in Disability Studies Quarterly (https://dsq-sds.org/) Yet despite being among the most impacted, their voices have been largely excluded from research, public health planning, and social service decision-making. This gap is unacceptable—and it must be addressed.

In late spring 2020, twelve adults with I/DD living in the United States shared their firsthand experiences of navigating the pandemic. Their stories reveal urgent concerns:

• Widespread uncertainty and confusion about the virus and its risks
• Major disruptions to housing, employment, and daily routines
• Increased pressure to manage personal safety with limited support
• Heightened strain in professional and personal relationships

These are not isolated challenges. They reflect systemic failures to include people with I/DD in crisis planning and response. We cannot continue designing policies about people with I/DD without designing them with people with I/DD. Moving forward, research, public policy, and service delivery must center the lived experiences of individuals with I/DD—especially during emergencies. Their insights are not optional. They are essential to building equitable, effective responses in times of crisis. (more….)