Background. For people with IDD and their families, COVID-19 has introduced additional challenges including significant disruptions to daily life and increased risk in accessing services and supports. Understanding how families are adapting and navigating through the crisis is critical both to inform ongoing supports as the pandemic continues and beyond as there will likely be ongoing changes in service and support delivery both directly and indirectly related to COVID-19. The purpose of this study was to survey families in one Midwest state in the U.S. to document experiences during COVID-19 with a focus on understanding how families are navigating current and new support needs related to general health and wellbeing, decision making, support needs and access to services for their children with IDD.

Method. An online survey was used to study 372 family members or caregivers who supported people with IDD across the life course. Results were analyzed descriptively to capture the experiences of families of children with IDD based on the type of questions for the overall sample as well as for each of the four age groups representing key life course transitions (0-4, 5-17, 18-21, and > 21).

Results. Across the life course, families and caregivers reported challenges from COVID-19 impacting several areas of daily life, including health and wellbeing, decision making, changes in support needs, challenges obtaining supports and services, and managing challenges. Across the ages, almost a third of the sample reported more support needs for behavioral or emotional needs and almost 20% reporting having trouble in supporting the increased needs. Further, a majority of family members in this study described fewer opportunity for important daily activities, including decision making and physical activity.

Conclusions. Families of children with disabilities reported increased support need for their child with a disability during the pandemic. Recommendations for planning for supports and services are provided.

Plain Language Summary

This study asked families about their experiences during COVID-19. Families and caregivers described challenges that affected their daily life. Many people said they needed more behavioral or emotional supports. Many people said they had trouble accessing supports they needed. Most family members said there were fewer opportunities for their children to make decisions. This paper includes ideas for how services and supports can be improved.