How COVID-19 May Change the World of Services to People With Intellectual and Developmental Disabilities

Abstract

The COVID-19 epidemic caused disruption and dislocation in the lives of people with disabilities, their families, and providers. What we have learned during this period regarding the strengths and weaknesses of the service system for people with disabilities should provide a roadmap for building a more robust and agile system going forward. Based on a canvas of leaders in our field, I propose a way of outlining a reimagined system.

The COVID-19 pandemic and quality of life outcomes of people with intellectual and developmental disabilities

“…21 Most providers were required to close services due to government orders, which hindered the continuity and security of PWIDD, and increased provider instability due to loss of revenue. 15 , 22 , 23 , 24 Many IDD service providers were struggling because of a lack of resources and funding, with some ultimately having to close, 15 hindering the continuity and security of PWIDD. Direct support professional (DSP) turnover, which was already problematic prior to the pandemic, also rose in the pandemic because of increased workload, DSPs leaving work to take care of children or family members, and DSPs' increased fears of being infected.…”

“… 26 Not only do PWIDD have less control over their lives than ever before, they have also seen their services and routines disrupted, decreased quality of support, and a rotating door of support staff, if they were lucky enough to not lose support altogether. 5 , 7 , 12 , 22 , 24 , 27 …”

“…In addition to lockdown restrictions that applied to all populations, many PWIDD were forced to isolate because of the increased threat COVID-19 represented to them, 13 , 25 , 27 and/or because they lived in settings that required them to stay home. 22 DSP turnover and shortages, 25 in combination with providers prioritizing health and safety above all else, 23 also meant PWIDD had fewer opportunities to participate in the community, even in ways that complied with social distancing. Health anxiety could have also led PWIDD to stay home more and avoid certain community activities.…”

“…The only outcome that increased in 2020 compared to 2019 was “people choose personal goals.” While this increase seems counterintuitive given the restrictions placed on PWIDD's lives, as a result of the closing of service lines, such as day programs, and people being home all the time, many providers needed to come up with creative ways to engage PWIDD, including by helping them learn new things. 22 This creativity led many providers to consider shifting to individualized person-centered supports moving forward. 22 Many PWIDD also received more personal attention from staff during this time, 22 which likely meant PWIDD were more often consulted about their preferences.…”

“… 22 This creativity led many providers to consider shifting to individualized person-centered supports moving forward. 22 Many PWIDD also received more personal attention from staff during this time, 22 which likely meant PWIDD were more often consulted about their preferences. The chance to engage in new and different activities may have also exposed PWIDD to new opportunities and skills, which changed their preferences and future goals.…”