Scott Landes, PhD, Associate Professor, Syracuse University
I spent much time the past 2 years expressing my concern in-person and in-print over the lack of data on COVID-19 outcomes for people with IDD. Inadequate health data for people with IDD is not a new concern, but the information gap has been severely
underscored by the pandemic. What I have not often verbalized is my appreciation and respect for provider organizations and states that invested the time and effort to: 1) collect COVID-19 data and2) share this data with researchers and the public
in the midst of such uncertain times. Both steps took commitment and courage.
Research I conducted with Dr. Margaret Turk and colleagues revealed that COVID-19 outcomes have been more severe among people with IDD, especially those living in congregate settings. As with the general population, COVID-19 outcomes related to older
age and pre-existing health conditions are of primary concern for people with IDD. None of this research would have been possible without individual providers, provider organizations, or the handful of states that had the foresight and wherewithal
to collect and share data.
Many of us will continue to advocate for better health data for people with IDD. At the same time, let us not forget to thank those providers and states that stepped up and filled the gap the past two years by collecting and sharing their data.