Everyone is struggling with the lifestyle changes forced on us by COVID-19, but things are extra tough for people with a developmental disability -- and their families.
With support services mainly moving online, some things are falling by the wayside.
"I don't have that support in the afternoon through the therapist, and so I have to pick up the responsibility all day long of keeping her engaged and doing all the things the therapist would have normally done, or the pre-school teacher would have normally done," said Jasmin Taitano of Redlands, whose daughter has autism.
Jennifer St. Jude of Lancaster said her two kids with autism are missing services like life skills instruction. While they are available virtually, she said, her children struggle with the eye contact required for Zoom or FaceTime.
St. Jude, who also has autism, said the uncertainty surrounding the new coronavirus is especially hard for her family right now.
"Not knowing that light at the end of the tunnel, not having that definitive time-frame is just like [a] total trigger for people on the spectrum," she said.
The best she can do right now, St. Jude said, is remind her kids -- and herself -- about history: that we've gotten through worse with less, like the 1918 flu pandemic.
Some children with a developmental disability suffer from more severe cognition issues, and the loss of in-person services can make it extremely challenging for parents to care for these kids now that they're "untethered," said Dr. Shafali Jeste, a pediatric neurologist and professor at UCLA.
"I see kids who have really, really challenging behaviors," said Jeste. She has patients with limited language skills who have aggressive or self-injurious behaviors that are managed in school, with medication, or both.
"I worry that those symptoms, those behaviors, can get a lot worse," Jeste said.
SOME SAFETY VALVES ARE GONE
At the same time, some safety valves parents and caregivers rely on in their day-to-day have been altered.
"Day programming and respite services are more challenging to deliver right now because the way people interact has changed," the California Department of Developmental Services (DDS) said in an emailed statement.
Regional centers -- nonprofits that contract with the state to provide community support for people with a developmental disability and their families -- "have increased authorizations for in-home respite care because of school and day program closures," according to the DDS.
"However, some families have not been comfortable allowing someone in their home to provide respite services, and some providers have limited the number of homes workers may go to," the agency added.
Many people with a developmental disability have other health problems, which presents yet another challenge, especially when COVID-19 has parents fearful of going to an emergency room because they're worried about infection.
"I've had patients with seizures, where the child has the seizure at home and the parents are nervous to bring them into the hospital because of the concerns about getting sick," said Jeste.
While many kids with developmental disabilities are overwhelmed right now, Jeste said it's not universally true. Some children, at least for now, are enjoying the break from school and the chance to spend more time with their families.
Still, Jeste said she sees a lot of kids with worsening behaviors and sleep issues.
"I don't think kids are going to regress irreversibly," Jeste said. "But I do believe that without sustained support, we will see kids not make gains in the way they might need to."
SOME COVID-19 RESOURCES FOR PARENTS AND CAREGIVERS:
- UCLA Center for Autism Research and Treatment
- The Autism Science Foundation's COVID-19 Resource Page
- California Department of Developmental Services Coronavirus Information and Resources