Christi Estrada has no idea when she’ll be able to visit her son again.
John Estrada, 33, has autism. He lives in a government-funded group home in Tucson, Arizona. In mid-March, Christi received a call informing her that John’s house was quarantined because of fears of COVID-19. He was not allowed to go to a day program where he worked one-on-one with a care provider, participated in games, drew on his iPad and went hiking and bowling. Christi was barred from visiting.
“He called and wanted me to pick him up and he doesn’t understand. He doesn’t understand anything about the coronavirus,” she said. “It’s just a real confusing time for him, and it’s hard to talk to him on the phone because it’s hard to know what to say.”
Rob Seaver is equally frustrated — but for different reasons. His daughter, Raegan, 19, also has autism and lives in a group home in Glendale, a Phoenix suburb. But administrators there have not imposed a lockdown. Rob is terrified that Raegan is going to get sick. The home is running low on toilet paper and hand sanitizer, he said. His frantic emails to state administrators went unanswered for days.
Raegan Seaver has autism and lives in a Glendale, Arizona, group home. (Courtesy of the Seaver family)
Arizona has a national reputation as one of the best states at providing services for people with intellectual disabilities. And yet residents, families and providers said that since the COVID-19 crisis exploded, they have received almost no guidance from the state’s developmental disability agency about how to best provide services and protection to stay safe and in business.
Uncertainty over the best practices for protecting the intellectually disabled from infection has led some providers to close their programs or divert aides from providing home visits. Some parents have been left to provide 24-hour care to children with intensive health needs. People with intellectual disabilities are struggling with unfamiliar and sometimes upsetting new routines.