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.
California’s safety net is stronger than in the rest of the nation. The Lanterman Developmental Disabilities Act, signed in 1969 by then-Gov. Ronald Reagan, guarantees care for people who are diagnosed before age 18 as intellectually or developmentally disabled because of such conditions as epilepsy, cerebral palsy, severe brain injury or, increasingly, autism, from cradle to grave.
Gov. Gavin Newsom has spent far more than other states on the needs of Californians with disabilities. His January budget proposal earmarked $9.2 billion for the Department of Developmental Services in 2020-21, nearly double the state’s spending a decade ago of about $5.5 billion in constant dollars.
However, program operators have been struggling for years, and even with the Newsom administration’s investments, the system remains underfunded by no less than $1.4 billion, a study done for the state shows. The pandemic has only worsened that situation.
Knowing that parents are struggling, leaders of the Autism Society San Francisco Bay Area offered grants of $250. The plan was to provide money to no more than 20 families in need.
The organization’s leaders were stunned when more than 400 people applied. The organization ended up doing a drawing and gave out 63 grants, said its immediate past president, Jill Escher, mother of a son and a daughter who have autism.
“Our kids are more expensive. They break more iPads. They break furniture,” Escher said.
In John Swezey’s case, he was diagnosed as autistic in 1969, the year the Lanterman Act was signed by Reagan. Today, he is able to speak a few words and can read simple sentences.
But he needs to be monitored constantly.And his mother repeats a refrain familiar to parents of aging autistic people.
“We can’t die, and we really can’t get sick,” Sue Swezey said. “In this climate, who knows. Suppose I got the plague? What would I do? I don’t know.”