Smalley’s younger son, Ty, who turned 12 this week, also has autism and does best when he has “a purpose and a destination,” she said. “We tried a walk in the neighborhood, and that was so upsetting to him,” Smalley said. “He wants to be going toward something. It’s not meaningful to him to say, ‘We’re getting fresh air.’ He just cried and cried.”
The Dublin-area brothers are among thousands of people across the nation whose developmental disabilities make it difficult, or impossible, for them to understand the sudden shrinking of their worlds due to the coronavirus pandemic.No school, no trips, no work. And for many of those who live in residential centers, no visits from family or friends.
“It’s essentially a lockdown,” said Larry Koebel, whose 48-year-old son, Doug, has severe disabilities and lives in a Columbus center. “It’s very, very hard. Doug’s a people person. He wants to be out.”
Government and private agencies that serve people with disabilities say they are doing all they can to deploy crucial front-line workers and services, even as schools and other day programs for adults scale back or shut down. The stress on those workers and on the families at home is enormous. Smalley, for example, is trying not only to occupy her sons’ time and calm their nerves but also to work from her home, which she shares with her elderly parents.
“One of the most critical needs that can’t be met” is behavioral needs, said Erin Nealy, executive director of Bridgeway Academy, a Columbus nonprofit education and therapy center for children with autism and developmental disabilities. “We have families who were already in crisis, with behavioral and medical concerns, even before this began.”
Both Nealy and Smalley, whose sons attend Bridgeway, said states such as Ohio need to take steps to allow Medicaid waivers and autism-scholarship funding to cover therapies and services provided online or by phone. That would provide some relief to families and help keep centers such as Bridgeway from suffering devastating financial losses, they said.
“They have indicated that they are working on it,” Nealy said of state officials. “Obviously, we’re not the only ones affected. This is a crisis, right?”
Adam Herman, spokesman for the Ohio Association of County Boards of Developmental Disabilities, said many counties are reassigning employees from nonessential duties so that they can work as needed in the community, pitching in on tasks such as grocery shopping or delivering cleaning supplies. “This is requiring an unprecedented level of flexibility,” Herman said, and counties are grateful that the state is willing to relax regulatory requirements.
Gov. Mike DeWine gave a shout-out Tuesday to all the direct-support workers continuing to care for some of the state’s most vulnerable residents. Despite high levels of responsibility, especially now, most such workers earn relatively low wages. “What the governor did meant so much,” said Pete Moore, president and CEO of the Ohio Provider Resource Association. “We heard from our people almost instantly.”
Smalley said she has had to postpone visits by her sons’ in-home support workers out of concern about the coronavirus and how it could affect her parents, one of whom has a chronic pulmonary condition. “It’ a challenge to figure out how to balance all that,” she said.
Although Brady and Ty are generally pleasant and happy kids, they aren’t eager to embrace their mom in the additional roles of teacher and therapist. Ty bites his hand sometimes when he’s upset; Brady sobs. “Brady has drawn a very fine line in his head,” Smalley said. “At home, he relaxes. He might play bingo with me or color, but math? Trying to get him to do homework here, I’m getting major pushback.”
Still, Smalley maintains her sense of humor and, as president of Bridgeway’s Parent Teacher Association, stays in touch with other families. She came up with a few activities that Brady found acceptable for his calendar (although not as fun as miniature golf or a planetarium visit). And Ty definitely preferred going to the park over just walking around the block.
“I might make a pitcher of daiquiris later, and that’s OK,” Smalley said, laughing. “We made it through today.”
