Article Last Updated: Saturday, January 18, 2003 - 9:53:13 PM MST

Fighting for education
Parents of kids with autism face daily challenge

By Lisa M. Sodders
Staff Writer

 

TARZANA -- Fifth-graders Aaron Bruck and Teddy Landes live just five doors apart on the same winding street. Both have younger sisters they alternately dote on and tease.

And both have autism, the complex developmental disorder that affects verbal and nonverbal communication and social interaction.

The boys' parents have fought to give their sons as many opportunities as they can, but no fight has proven more frustrating than their search for a sound education.

Their struggle, according to the boys' parents and critics of the Los Angeles Unified School District, exemplifies what's broken in a district accused of cutting corners to save money on spiraling special education costs.

"My kid is still a child of taxpayers in the district," said Teddy's father, Stan Landes, an attorney who teaches part-time at California State University, Northridge. "My child is still entitled to a free and appropriate education."

But what constitutes a "free and appropriate education" is, at best, a fuzzy concept in the highly regulated world of special education.

Known by its four-letter acronym, FAPE is guaranteed to children with disabilities under the federal Individuals with Disabilities Education Act.

The law defines it as one that "emphasizes special education and related services designed to meet (disabled children's) unique needs and prepares them for employment and independent living."

For the district, FAPE means assembling a program that will "bring the child to the starting line," said Donnalyn Jaque-Anton, associate superintendent of special education.

"There's a certain misunderstanding to what is FAPE in terms of ceiling and floor," she said. "It's not just what's good, but what's calculated to bring some benefit."

But that can be hard to achieve in LAUSD, where efforts to educate a large number of special needs children are hampered by inadequate federal funding and a dearth of resources, such as speech and language therapists.

Growing numbers Since 1996, the number of special education students has grown by nearly a quarter to about 86,000, or nearly 12 percent of the district's total enrollment.

It also spends 12 percent of its $10 billion budget -- or $1.2 billion -- on special education services. This breaks down to an average of $7,065 annually for general-education students, and $12,976 for special education students.

Because federal funding doesn't cover the full cost of educating students with special needs, district officials say, their reach is limited.

Under the Individuals with Disabilities Education Act passed by Congress in 1975, the federal government was expected to cover 40 percent of the cost of educating students with disabilities and behavioral problems.

Since then, the subsidy granted to schools nationwide has averaged 8 percent a year. But last year, the subsidy amounted to just 6.1 percent for LAUSD, representing a shortfall of more than $400 million.

"Special education is underfunded and the federal level needs to come to the table with what they promised," Jaque-Anton said. "People shouldn't be angry at the local level. We're endeavoring to get our representatives to fully fund what special education should have. It's a long-standing issue that creates resentment and pits general and special education against each other, when we should be working on a unified system."

The district also struggles to provide special education services. The problem is especially acute for qualified speech and language therapists, who are in short supply nationwide.

The district is trying to compensate for the shortage by contracting with nonpublic agencies and using interns from the 14 universities in California who train these therapists.

Parents discouraged While LAUSD officials say they are doing all they can to help special education students, parents say the district routinely denies services to their children to save money, figuring most parents don't have the money to fight the decision in court.

Parents are told, "We don't do that," or "He's not eligible," but when questioned, district officials are reluctant to put anything in writing, said Ruth N. Holzman, a parent of an autistic child who serves on the Chanda Smith Consent Decree committee.

The decree is part of a 1996 settlement of a class action civil rights lawsuit that calls for improved programs and services for the district's special needs students. A committee of parents, educators and community members are responsible for overseeing implementation of the court order.

But even when services are available, obtaining them can be cumbersome and time-consuming.

Recently, the district gave parents a list of vendors specializing in speech, behavior therapy and other specialties that it wants parents to contract with. The Landeses called three speech therapists who had offices nearby.

One never returned the family's phone calls, another had a waiting list that would have delayed Teddy's therapy until the end of this school year, and the third was a recent college graduate who had never worked with an autistic child.

For now, the Landeses are staying with the speech therapist they found on their own three years ago, although the district reimburses less than half of her fee.

"It took six months for Teddy to establish a rapport with the wonderful therapist he has. I don't have another six months to waste," Stan Landes said.

In fact, the family has spent years cobbling together a peripatetic education for Teddy because no single school can provide for all of his needs. Since preschool, Teddy has changed schools four times and attended one school twice.

"There are people who say every neighborhood school has to have it, but the reality is, it's not going to happen," Stan Landes said. "I don't think every neighborhood school can be all things to all people, but you shouldn't have to travel an hour and a half."

Jaque-Anton said the district is allowed to do some "clustering" of students if services aren't available at their home schools, but is working to minimize that so students can stay with their neighborhood peers.

Out-of-pocket costs Like many families with special needs children, the boys' parents supplement special education services out of their own pockets.

At Cantara Street School in Reseda, Teddy gets adaptive physical education, speech therapy and occupational therapy.

After school, he receives behavior therapy in Encino, paid for by the district; additional speech therapy, partially paid for by the district; and music therapy at CSUN and horseback-riding therapy, both of which the Landeses subsidize. On Sundays, Teddy plays Little League baseball on a special needs team in Altadena.

Aaron's parents put him in a private school at their own expense until the district began paying his educational costs when he reached kindergarten. They also paid for a one-on-one aide until kindergarten.

"He wasn't ready for a big, 650-person playground mayhem," said Aaron's mother, Helen Wu, noting that autism makes Aaron extremely sensitive to noise and crowds.

Like many autistic children, Aaron is a bundle of contradictions. Despite problems with fine motor skills, he plays piano. He recently played Rolf, the budding Nazi, in a local theater production of "The Sound of Music."

"He is fascinated by cars and mechanical things and he pretty much has memorized the Consumer Reports 2002 rating for cars and SUVs," Wu said, noting that Aaron informed both his uncle and his aide that the cars they bought weren't the most reliable ones on the market.

But she sees trouble ahead, as Aaron grows older and is asked to achieve more challenging goals.

"As he progresses and goes up the grades, he's having trouble with things that are more abstract, like literature," Wu said. "His strengths are going to be in areas where (concepts are) more concrete."

Despite the problems they encountered, Wu and her husband say they are now satisfied with their son's education. But that could change next year, when he will matriculate to middle school.

"I think his elementary school years are better than I ever could have imagined they would be," Wu said. "I just feel blessed at how far he's come. We put a lot into it, but I just feel blessed."