Lack of Tracking

COVID-19 AND INDIVIDUALS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

As of July 23, 2021, the United States had approximately 34 million confirmed cases and over 610,000 deaths related to COVID-19. 1 Individuals with intellectual and developmental disabilities (ID/DD) are at greater risk for infection and adverse health outcomes due to COVID-19 than individuals without ID/DD for a variety of reasons, including a high prevalence of underlying medical conditions; difficulties accessing information, understanding or practicing preventative measures, and communicating symptoms of illness; and residing in a congregate care setting.2,3,4,5

Despite the high risk of COVID-19 infection and mortality among individuals with ID/DD, there is no standardized national framework to facilitate the collection and sharing of COVID-related data for this population. An increased understanding of state collection and reporting of COVID-19 data for the ID/DD population may help inform future policies, programs, and practices that aim to reduce the risk of infection and mitigate adverse effects of COVID-19 and other infectious diseases.

Still, cases are flying under the radar. When The Associated Press did a national survey in June of how many people in such housing have fallen sick or died of COVID-19, about a dozen states didn't respond or release comprehensive data.

"The delay or complete lack of access to this data comes with a body count," Jorwic says. "You're not acknowledging that these settings are just as dangerous as other settings, like nursing homes."

Centers for Disease Control and Prevention guidelines recommend that states prioritize long-term care facilities early in the vaccine rollout, but few states specified that people with disabilities who live in group homes should be candidates for that initial vaccine distribution

Source:NPR