Jonah is one of more than 46,000 California schoolchildren diagnosed with the enigmatic condition known as autism. That’s more than triple the 14,000 enrolled at the beginning of the decade, making autism the fastest-rising disability in the state
State’s schools lack cohesive plan for autism
Sunday, July 13, 2008
Left to himself, 11-year-old Jonah Kasoff slips easily into what his family calls Jonahworld, an inner sanctum where he can flutter his fingers and utter “whoa! whoa! eh, eh” for as long as he likes.
His family would rather that he study math.
“Make no mistake – Jonah is clearly severely impacted by his autism,” said his grandfather Marv Kasoff of San Francisco. “But it turns out that he is bright and can learn and make progress.”
Jonah is one of more than 46,000 California schoolchildren diagnosed with the enigmatic condition known as autism. That’s more than triple the 14,000 enrolled at the beginning of the decade, making autism the fastest-rising disability in the state – and the most expensive and challenging for schools to address.
But the education system has not kept up: State experts acknowledge that California schools lack a coherent education plan for these students, employ far too few qualified teachers, and have to divert regular-education funds to supplement special education budgets.
Bluntly put, the problem is “a lack of coherent, universally accepted, effective educational practices” for teaching students with autism in the state’s schools, the state Department of Education’s Autism Advisory Committee declared last fall in a report.
So many “intensive services” are needed, the panel said, that autism “threatens to overwhelm local educational systems.”
Lest anyone call that hyperbole, the panel added: “This statement is not an exaggeration.”
It means that thousands of California families are caught in a chasm between what they believe their disabled child needs and what the schools are willing and able to provide.
“The dramatic growth in the number of children affected by autism spectrum disorders now constitutes a public health crisis,” says another panel of experts, the California Legislative Blue Ribbon Commission on Autism, created in 2005 to figure out how public agencies could meet the escalating needs of families like the Kasoffs.
New recognition of condition
In 2000, 2 out of every 1,000 California students was diagnosed with autism. Today, it’s 7 out of 1,000. But experts say it’s not a new disease taking hold, but a new recognition that kids may have deeper problems and need more services.
“If you show me 100 kids with autism, 60 percent would not have been diagnosed that way 10 years ago,” said Bryna Siegel, director of the Autism Clinic at UCSF. They would have been “mentally retarded” or “learning disabled,” or listed as having a “speech and language” disability, she said.
Records show those categories shrinking as autism grows. So educators refer to a “tidal wave of autism” presenting schools with a dilemma nearly as vexing as autism itself:
What’s the best way to teach children with autism? Where are the qualified teachers? And now that studies show it costs $36,000 annually to teach each student with autism (compared with $8,558 for regular education), how can districts keep pace as enrollment of children with autism rises by an average of 19 percent per year?
“We certainly have a problem on our hands,” said Janelle Kubinec, associate vice president of School Services of California, a company that provides financial advice to districts around the state.
For years, the high cost of special education has forced districts to skim off money from their regular education budgets. But today, regular education is a virtual ATM card for special education.
Schools transferred more than 30 percent of regular-education dollars to special education this year, up from 4 percent in 2000, Kubinec said. She gave three reasons: inflation, higher demand for services – and autism.
“It does appear it will continue to rise at a staggering rate,” Kubinec said. “Something is definitely broken in how we fund special education.”
Federal law says that from birth to 22, everyone with a disability is entitled to a free education “appropriate” for their unique needs.
But students with autism can’t always count on educators to know what’s appropriate because, as the state autism panel found, they have yet to agree on what services are beneficial or cost-effective.
One reason for the indecision is that autism shows up differently in different people: Some can speak; some can’t. Some are bright; some aren’t. Some behave unpredictably; others behave with robotic consistency.
That’s why it’s called the autism spectrum. Most, like Jonah Kasoff, find little comfort in the company of others and tend to retreat into a solitary world of repetitive motions or sounds.
40 services in state system
The California school system offers more than 40 separate services for autistic students, from nearly ubiquitous “language and speech” therapy, to rare, short-term help for families with autistic babies.
A well-run system should offer appropriate services to each student who needs them, said Sally Rogers, an autism expert at UC Davis’ MIND Institute, which stands for Medical Investigation of Neurodevelopmental Disorders.
But pick any two districts with similar numbers of autistic students, and you’ll find little consistency in services offered or students served.
Bay Area districts are no exception. Of the region’s 147 districts, 20 serve at least 100 students with autism – up from 15 last year. They range from Palo Alto Unified, with 103 students, to the Santa Clara County Office of Education, with 431. San Francisco is next largest, with 373.
The Chronicle looked at the districts with large enrollments and found that access to services often depends more on where children live than on what they may need. Three services tell the story:
— Behavior intervention: A systematic approach helps students learn to behave appropriately in social settings.
— Occupational therapy: A certified therapist helps students improve practical skills, from holding a pencil with the proper grip to organizing for homework.
— Intensive individual services: An aide assists one student for all or part of the day.
Across the 20 Bay Area districts with the largest autism enrollments, an average of 11 percent of students get behavior intervention, The Chronicle found. But the rate is three or four times higher in some districts, such as San Mateo-Foster City Elementary, Pleasanton Unified and the Sonoma County Office of Education.
By contrast, the data show that almost no students with autism in San Francisco, Oakland or Hayward unifieds get the service.
Far more Bay Area students get occupational therapy – 35 percent – than behavior intervention.
Yet more than half of students with autism get OT in some districts (Sonoma County Office of Education, West Contra Costa, Mount Diablo and San Ramon Valley unifieds), while very few get it in some others.
That’s been frustrating for Feda Almaliti of Fremont, where 14 percent of autistic students get OT. One of them is her son, Muhammed, 3, who has “hypotonia” – weak muscles. It means he can’t scribble, use scissors or bounce a ball.
“I worked very hard to get it,” Almaliti said. Yet despite receiving two 30-minute sessions a week for months, Muhammed made no progress. Almaliti believes it was too little.
But without guidelines, it’s guesswork in each district, and Almaliti is considering moving to a district more generous with OT. Fremont’s special education director, Jack Bannon, says schools are required to teach academics, not tackle medical issues like hypotonia. He prefers that teachers use approaches similar to occupational therapy in class.
“Cost is not an issue,” he said. “We provide what is appropriate and necessary.”
Another area of disagreement surrounds one of the most expensive – and coveted – services: the one-to-one aide. Many families, like the Kasoffs, believe that only a personal instructor can provide the focused attention their highly distracted children need.
Portion of students with aide
In the Bay Area districts with large autism enrollments, 12 percent of students had an aide, records show. But students stand a far better chance of getting one if they live in San Ramon Valley Unified or Pleasanton than in Cupertino, San Francisco or New Haven. In San Ramon Valley, for example, 39 percent of autistic children have a personal aide.
“Yes, it does increase the cost,” said special education director Linda Rowley Thom. “However, in the long term, if it supports (students) meeting their goals, then it is cost-effective.”
They don’t see it that way in San Francisco, where eight of the district’s 373 autistic students, or 2 percent, have an aide.
One of them is Jonah Kasoff. With six classmates and four adult aides, Jonah’s classroom at Yick Wo Elementary School looks like many others for students with special needs across California. But he has other, less common benefits: a teacher with expertise in autism and a one-to-one aide who provides hours of individual instruction each day.
The Kasoffs see those as basic necessities. But to get them, the family threatened to sue San Francisco Unified three times under the federal Individuals With Disabilities Education Act.
David Wax, the district’s special education director, said such aides can actually inhibit progress in children with autism.
“By having one person, the child won’t respond to anyone else,” Wax said. “Part of helping is to help them become more independent.”
While educators have yet to agree on a common educational approach for autism, few disagree that an expert is needed at the head of the class.
“Assisting students with this diagnosis requires teachers who are highly qualified,” said Mary Hudler, head of the California Department of Education’s special education division.
Qualified teachers needed
But schools have been hampered by their own regulations: Only 677 teachers are qualified to teach the state’s 46,196 students with autism because they hold the required “moderate-to-severe” special education credentials.
Recognizing the need for more qualified teachers, the Commission on Teacher Credentialing is revising the rules to let the state’s 2,566 teachers with “mild-to-moderate” credentials teach children with autism – and for the first time will require courses in autism. The new rules are expected to be in place by next summer.
Meanwhile, a bill making its way through the Legislature by Assembly Speaker Karen Bass, Baldwin Vista (Los Angeles County), could change the credentialing rules immediately.
“Thank goodness!” said San Francisco State University Professor Pamela Wolfberg, who founded one of the nation’s few autism-education programs for aspiring teachers last year. “It’s a special knowledge. You really need to understand the unique ways people with autism communicate, process information and socialize.”
Jonah Kasoff’s teacher, Rosie Lukanc, is that kind of educator. She began working with autistic children at age 12 as a teaching assistant. She earned a “moderate to intensive educational needs” degree from Ohio University in 2004 and did student-teaching with autistic children.
“Humor is a great motivator,” said Lukanc, who sings and jokes with her students, keeping each one engaged. “My students like to laugh just as much as any other kid.”
The Kasoffs’ beef isn’t with Lukanc. Instead, like Almaliti in Fremont, they want Jonah to get more of the targeted, individual instruction they believe he needs.
“Jonah gets half an hour of ‘language and speech’ three times a week,” said Marv Kasoff, his grandfather. “For a kid who doesn’t speak, that’s crazy. They should be banging away at language and speech four hours a day.”
Building a preschool program
For their part, San Francisco’s special education experts are focusing on creating a preschool program to attract back children enrolled in private programs.
“It’s a win-win and creates a positive relationship with parents for the next 19 years,” said Wax, the special education director.
But as the district places greater attention on early intervention, the Kasoffs fear the needs of older children with autism could be overlooked.
So Marv Kasoff recently visited the Wings Learning Center in Burlingame, which specializes in children with autism.
With California schools so indecisive about autism, Kasoff said, it may take a private school like Wings, and its $45,000 to $55,000 tuition, to give his grandson the education he needs. He knows Jonah is not destined for college, but Kasoff still wants him prepared for a satisfying career.
“Jonah loves routine,” Kasoff said. “Guess what? He could be a supermarket bagger and love it.”
And that’s why the public schools should focus far more on independence and practical skills, he said, because “these kids can do something.”
Autism by numbers in California schools
Average annual cost per pupil with autism:
$36,000
Ages of disabled people (including autism) who are legally entitled to a free and appropriate education:
Birth to age 22
Statewide autism enrollment:
In 2000: 14,039
(2 in 1,000 students);
In 2007: 46,196
(7 in 1,000 students).
Bay Area autism enrollment:
In 2000: 2,565 students;
In 2007: 7,720 students
Teachers whose special education credentials allow them to teach children with autism:
677
Bay Area districts with at least 100 students with autism: Santa Clara, Sonoma and San Mateo county offices of education; San Francisco, Mount Diablo, Fremont, Oakland, West Contra Costa, San Ramon Valley, San Jose, Hayward, Pleasanton, Fairfield-Suisun, New Haven, Santa Clara, Vallejo City and Palo Alto unifieds; Cupertino Union, San Mateo-Foster City, and Evergreen elementary districts.
Sources: California Department of Education, American Institutes for Research, and California Commission on Teacher Credentialing
Autism and its symptoms
Q: What is autism?
A: Autism is a developmental disability that affects each individual differently. It’s the result of a neurological disorder that impacts brain development in the areas of social interaction and communication.*
Q: What are the symptoms?
A: They range from slight delays in language with greater social challenges, to difficulty conversing and, in some cases, aggressive and/or self-injurious behavior. Other traits may include: insistence on sameness, repeating words, preference for solitude, little fear of danger, ignoring verbal cues and being unresponsive to normal teaching methods.*
Q: How do autism and Asperger’s syndrome differ?
A: Asperger’s is a form of autism. There is no speech delay, though speech patterns may lack inflection, have a rhythmic nature or be loud or high-pitched. Another distinction concerns cognitive ability. While some people with autism have mental retardation, those with Asperger’s usually have average to above-average intelligence.*
Q: What can ease the symptoms?
A: Research shows that early intervention yields great progress in children by the time they enter kindergarten, often reducing the need for intensive supports.*
Q: Why is autism on the rise?
A: Mainly because of changes in diagnoses. Once identified as having anxiety, obsessive-compulsive disorder, delayed language, mental retardation or learning disabilities, many children are now placed on the “autism spectrum.” Between 2004 and 2007, as autism enrollment in California schools rose by 57 percent, enrollment of “learning disabled” children fell by 9 percent, and enrollment of “mentally retarded” children fell by 3 percent. Other possible causes for the increase have yet to be confirmed.**
Sources:
*Autism Society of America
**Bryna Siegel, director of UCSF’s Autism Clinic
E-mail Nanette Asimov at nasimov@sfchronicle.com.
http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/07/13/BAFH103EEM.DTL
This article appeared on page A – 1 of the San Francisco Chronicle
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