By Alan Zarembo, Los Angeles Times
December 13, 2011
Second of four parts
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.
DISCOVERING AUTISM
The series at a glance:
Part 1: An epidemic of disease or of discovery?
Part 2: Services go to those who fight hardest
Part 3: Families chase the dream of recovery
Part 4: Finding traces of autism in earlier eras
About the series | Discuss
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
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.
In the state’s largest school district, Los Angeles Unified, white elementary school students on the city’s affluent Westside have such aides at more than 10 times the rate of Latinos on the Eastside.
It might be tempting to blame such disparities on prejudice, but the explanation is more complicated.
“Part of what you’re seeing here is the more educated and sophisticated you are, the louder you scream and the more you ask for,” said Soryl Markowitz, an autism specialist at the Westside Regional Center, which arranges state-funded services in West Los Angeles for people with developmental disabilities.
In both the developmental system and the schools, the process for determining what services a disabled child receives is in essence a negotiation with the parents.
Because autism has come to encompass such a broad range of children — from those who never learn to speak or use a toilet to math whizzes unable to make friends — there is often bitter disagreement over what a child needs and who should pay.
Racial disparities
The level of autism services also varies by race and ethnicity. Here are figures on average spending per autistic child across the developmental services system.
Source: California Dept. of Developmental Services. Graphics reporting by Alan Zarembo
Data analysis by Sandra Poindexter
Thomas Suh Lauder, Doug Stevens Los Angeles Times
The financial squeeze on school and state budgets has turned up the temperature, leaving officials caught between legal mandates to help autistic children and pressure to curb spending.
In California last year, autism accounted for one tenth of special education enrollment but one third of the disputes between schools and parents on record with the state.
Carmen Carley, a professional advocate for families seeking public services, said parents who present themselves as formidable opponents fare best.
“Wear a fake diamond ring,” she tells mothers who don’t have a real one. “Make them think you’re ready to fight. Don’t show them you’re weak. Don’t show them you’re tired.”
Carley, of Torrance, gained her expertise by advocating for her own son, Collin, now 14. He received state-funded behavioral therapy for more than eight years as a result of her efforts, which included taking the officials at the Harbor Regional Center in Torrance before a judge.
In contrast to warrior parents, some families simply accept what they are offered.
Gissell Garcia of South Los Angeles was diagnosed with autism at age 3, early enough that intensive therapies might have helped. But her parents, Mexican immigrants who support themselves on the father’s factory job, say that neither L.A. Unified nor state officials ever mentioned the possibility.
The couple requested a one-on-one aide for Gissell. She had a habit of inserting objects into her ears and nose, and they worried she might hurt herself. But school officials said there were enough staff members in her special education classroom to keep an eye on her.
For several years, Gissell has received speech therapy for 30 minutes a week during school.
“I didn’t ask for anything more,” her mother, Yolanda Ortega, said in Spanish. “I accepted it because I didn’t know. I thought she would eventually talk.”
Now 11, Gissell has learned to point when she wants something. The sounds she makes are unintelligible.
