In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters. And coronavirus is proving to be the biggest disaster of all.
In mid-November, my wife Veronica got a phone call she’d been dreading. Her brother Vincent was very sick, and had been taken by ambulance to our local hospital. Veronica raced there, where she found Vincent febrile and groggy, complaining of abdominal and chest pain. He was placed in the covid-19 unit and given oxygen while we awaited definitive test results.
Vincent is one of an estimated 7.4 million Americans with intellectual and developmental disabilities (IDD). Like roughly 600,000 others, he lives in a Community Integrated Living Arrangement, or CILA for short. Residents and the staff who care for them are at high risk during this pandemic. They should be given correspondingly high priority for covid-19 vaccines.
Americans can be proud that we no longer warehouse people with Down syndrome, Fragile X, autism and related conditions within institutions and state homes. But we cannot be complacent about the dangers they face.
A mere bicycle ride from my house, 263 residents and staff at the Ludeman Developmental Center were infected with covid-19. Nine died. One English study found that adjusting for a wide range of characteristics and physical health challenges, people with Down syndrome were 10 times more likely to die of covid-19. U.S. studies also find sharply higher covid mortality among people with intellectual and developmental disabilities.
Across the United States, it’s unclear where CILAs or sprawling complexes such as Ludeman stand in the vaccine queue. There is no national definition of long-term care facilities. States decide this on their own. Illinois’ covid vaccine plan makes little mention of IDD, though officials recently indicated that developmental centers and CILAs would receive priority. Other states took a similar approach, referencing disability and residence in a congregate setting in broad terms as factors in setting priority for vaccination, but neglecting to clarify where people with IDD stand. Nationally, caregivers, family members, CILA residents and staff are largely in the dark.