When losing a routine is what hurts most
Thomas Beier misses his friends. Every day, the 22yearold asks his mother, Cathy Beier, to drive to Las Trampas, the developmental care facility in Lafayette where Thomas spent most of his days before the coronavirus shut down the state. It’s part of their new daily routine. Sometimes she takes him there so he can say hello to the administrators still working.
We’ve all seen our routines zapped by the coronavirus, but what’s it been like for people whose routines matter more than most? The isolation and loneliness we’re experiencing is intensely different for adults with disabilities such as Down syndrome and autism. Mapping and keeping a routine is essential for the development of social and life skills.
“There’s a million aspects of having a social life that we all take for granted because, if anything, we have too much of them,” Cathy Beier said. “But for Thomas, Las Trampas is what provided that.”
There are more than 350,000 Californians with intellectual or developmental disabilities, according to the California Department of Developmental Services. About 22,000 live in Alameda and Contra Costa counties, according to the Regional Center of the East Bay, which works with agencies to plan and coordinate services in both counties.
Las Trampas serves almost
60 people in its adult development program, the MondayFriday day program Thomas Beier attends. Las Trampas also runs adult residential facilities. People with intellectual and developmental disabilities are having a difficult time understanding why they have to stay home, Daniel Hogue, Las Trampas’ executive director, told me.
“This has been a huge disruption to their routine,” he said. “For people with developmental disabilities, especially autism, routine is so highly important.
“That routine of getting up every morning, getting ready, getting dressed and getting on to the bus, coming to day program, visiting with your friends, learning and then going back home has been totally disrupted.”
In 2018, 42% of Regional Center of the East Bay’s clients had autism, and 14% had a severe or profound intellectual disability. And 76% lived at home with a parent or guardian.
Cathy Beier began keeping Thomas home on March 12. She easily remembers the date because it’s her birthday. She’s been a fulltime caregiver since Thomas was born. And last year her husband, Thaddeus Beier, was diagnosed with frontotemporal dementia. She’s caring for two people now.
“I feel very safe knowing exactly where they both are all day,” Cathy Beier said. “They are as protected as I can make them, and that’s very important to me.”
But Thomas wants to return to Las Trampas. So do many others.
“They are now stuck in a situation they don’t want to be in, and many of them without really being able to understand why, which I think is the hardest thing,” said Greg Simons, director of adult day program services at Las Trampas.
Lisa Kleinbub, Regional Center of the East Bay executive director, said the center is following county guidelines on reopening. But for places like Las Trampas, reopening goes beyond numbers and space. Some clients who can’t socially distance on their own are going to need more personal space. Transportation also has to be considered. A little more than half of Las Trampas’ clients take public transportation.
There’s also concern about how California’s estimated $54 billion budget shortfall will impact the Department of Developmental Services, which faces tens of millions in cuts.
“We all know that we’re in an economically bad situation, but I think among regional centers, among other advocates and service providers, we’re really focused on the federal legislators now in order to push for additional funds to come into the state because many of the cuts the state has proposed would go away if federal funding came in,” Kleinbub said.
There’s one positive that’s emerged from the pandemic, she said.
“A lot of people that we work with have learned how to use a lot of technology that may make their lives in the future better,” Kleinbub said.
If it wasn’t for the Las Trampas’ Zoom classes, Bellinda Bluntach’s not sure she’d be able to get her son, Brennon Bluntach, out of bed. He lost the structure of getting up at 6:30 a.m. for the day program, and he’d started going to bed late and sleeping into the afternoon. But now he gets up and logs into Zoom for the 9 a.m. class.
“It put back the normalcy in our lives with the routine,” said Bellinda, a single mother who works as aide in a preschool classroom for students with autism. “When you’re a parent of a special needs child, this is what you hope for.
“I feel really lucky to not only be able to work with the kids, but also to have Brennon be a wonderful example of what can be done with the right interventions.”
As we talked, I could hear Brennon, 22, playing the piano in the background.
As Brennon’s song ended, Bellinda told me to hold on as she clapped. It’s part of their routine.
“Bravo. Nice job. That was beautiful,” she told Brennon.
To me, she said, “If I didn’t come in and clap, he would find me and say, ‘Mom why didn’t you clap?’ ”