Autism services go to the families who fight hardest
From the day her son was diagnosed with autism nine years ago, Stacie Funk has made it her full-time job to find him the best possible help. Hiring lawyers and experts to press her case, she established herself as a mother whose demands could not easily be dismissed.
The result has been a bounty of assistance for Jonah: A behavioral therapist who works with him at home and comes along on family outings, a personal aide at school and specialists to design his curriculum, improve his speech and refine his motor skills.
So far, the state of California and the Los Angeles Unified School District have spent at least $300,000 on specialized services for Jonah.
Now 13, he bites his hands, pinches his younger siblings and is easily flustered by changes in routine. But his mother is proud of the progress he’s made — his ability to express his needs, read aloud and surf the Internet for movie trivia.
The outside support, she said, helps hold the family together.
“Am I more entitled than someone else?” said Funk, of Encino, whose husband owns a trophy-parts business. “No. But that’s how the system is set up.”
Getting a wide array of help for an autistic child can require waging a small war with the gatekeepers of state and school district services. But not all parents have the time and resources to fight the way Funk did. That contributes to striking disparities in how services are distributed.
Public spending on autistic children in California varies significantly by racial or ethnic group and socioeconomic status, according to data analyzed by the Los Angeles Times.
Jonah Funk, 13, was diagnosed with autism nine years ago. His mother, Stacie, says she often describes herself as his eyes, his ears and his voice. “I want him to be treated fairly,” she said. “I want him to receive the things he needs.”
For autistic children 3 to 6 — a critical period for treating the disorder — the state Department of Developmental Services last year spent an average of $11,723 per child on whites, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.
Data from public schools, though limited, shows that whites are more likely to receive basic services such as occupational therapy to help with coordination and motor skills.
The divide is even starker when it comes to the most coveted service — a behavioral aide from a private company to accompany a child throughout each school day, at a cost that often reaches $60,000 a year.