Districts
Put To The Test
by Michael Kolber, The Sacramento Bee, January 2, 2004
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https://www.bridges4kids.org.
At her
Clarksburg home, Karlin Merwin and a team of tutors have spent
four years teaching her 9-year-old son, Jackson, how to live.
Today, they are testing to make sure he knows the emotions.
Sarah Post, a tutor, shows Jackson a photo of a boy about his
age who looks worried.
"What does he feel?" Post asks.
"Bored? Annoyed?" Jackson tentatively replies.
"What does anxious look like?" Post asks.
Jackson makes a face. He doesn't look anxious. A minor setback.
"So we found out that anxious is not solid," Karlin Merwin says
to Post.
A typical third-grader would understand that someone with a
worried expression is anxious, even if he does not know the
word.
Not Jackson Merwin, who is autistic.
Jackson's tutoring sessions teach him communication and
behavioral skills that are intuitive to nonautistic children --
sessions that put him and thousands of other autistic children
at the center of a growing dilemma for California.
Experts say these intensive treatments are the only technique
proven effective in giving autistic children the skills they
need to live independent lives.
Yet, with the state's autistic population doubling in four
years, the success of these lessons and their high costs -- as
much as $60,000 a year per child -- threaten to overwhelm school
districts already struggling to balance budgets.
"This is how he's learned how to do everything he knows how to
do," Karlin Merwin says. "Autistics don't have the ability to
learn by osmosis."
In 1975, Congress promised to pay 40 percent of special
education costs. Over the years, it typically has funded less
than half that. That sticks the bulk of the costs to the state
and the schools, which are required by law to offer an
"appropriate" education to all students.
Because the special education population can grown rapidly,
budgets can unexpectedly balloon. And districts seeking to hold
down costs frequently duel with parents about how much care is
appropriate. Federal law gives parents significant rights in
approving individual education programs.
"Under federal law, money's not the issue," said Shelton Yip,
special education administrator for the Sacramento City Unified
School District. "To meet the needs of students, that's our
charge."
Programs like the one Jackson receives can require working with
home tutors and classroom aides for up to 40 hours a week.
If the federal government isn't concerned with how to pay for
the growing autistic population, the districts need to be.
In 1987, less than 4 percent -- 2,778 -- of people in the
state's developmental disabilities system were autistic. In
2002, nearly 13 percent -- 20,377 -- were, according to the
Department of Developmental Services.
The boom has reached the Central Valley region, as well.
The caseload mushroomed 325 percent from 1994 to 2001, according
to the Valley Mountain Regional Center. The nonprofit
organization is under contract with the state to serve the
developmentally disabled in Stanislaus, San Joaquin, Amador and
Calaveras counties.
In comparison, the caseload for all disabilities grew about 5
percent a year in the same seven years.
Further increase expected
Howard Cohen, the center's director of clinical services, said
the figures from the past two years indicate that the rapid
increase in autism will continue.
Much of the treatment for autistic children is funded by the
state. The annual budget for the Department of Developmental
Services' 21 regional centers has swelled to $2.1 billion, but
Gov. Schwarzenegger has proposed more than $200 million in cuts
over the next 18 months. Those cuts would affect some services
for autistic individuals, but not the behavioral programs.
"We have children that have gone through our program, if they
didn't get treatment they would never be able to get a job,"
said Mila Amerine-Dickens, executive director of the Central
Valley Autism Project in Modesto, which is consulting on
Jackson's treatment. "Will they give to society, will they not
give to society may have something to do with whether they get
treatment."
But $60,000 of treatment a year does not guarantee a cure.
Little is certain in the murky world of autism -- least of all
why the state's caseload has surged since the mid-1980s, when
the system had fewer than 3,000 individuals with autism.
"It's hard to comprehend what the impact of 800 children coming
into the system every three months is," said Ron Huff, a senior
psychologist at the Department of Developmental Services.
Without treatment, autism materializes in a range of
dysfunctions. Children lose or never acquire speech. If they can
speak, they sometimes can't carry on meaningful conversations or
form friendships.
They perform repetitive or self-injuring actions. They don't
play appropriately with toys or their friends. At puberty, their
behavior can become sexually inappropriate.
One of the few certainties is that an autism diagnosis will be
followed by years of worry for parents and, frequently, a
struggle to get treatment they believe their child needs.
About 120 hearings on special ed disputes were held last year, a
50 percent rise in the past few years, said Glenn Fait, director
of the state Special Education Hearing Office. About 2,000
requests for hearings were filed last year; most were settled in
mediation.
Fait attributes much of the rise in disputes to the state's
autism caseload and parents' increasing awareness of treatment
options.
"There's nothing more protective than the parent of a severely
disabled child," he said.
Parents, district at odds
Jackson Merwin has been at the center of one of those disputes.
Since 1999, parents Karlin and David Merwin have been exchanging
legal barbs with the River Delta Unified School District in Rio
Vista. The disagreement centers on the tutors and how they
should be paid.
In August, the district held a meeting to examine Jackson's
educational plan for the year, without the parents present. A
decision was made to have a school employee not trained in
behavioral treatment serve as Jackson's in-school aide.
Karlin Merwin said that when school started, the lack of a
trained aide provoked 10 days of tantrums from Jackson unlike
anything he'd had since 2001. She played a videotape recently of
one of those tantrums. For long minutes, Jackson hit the table
and himself and shouted garbled phrases.
"Without the right programming, this is what he would be like
all the time," Merwin said.
When the Merwins would not agree to River Delta's educational
plan for Jackson, the district asked the state Special Education
Hearing Office to impose it. Instead, a hearing officer ruled
the district erred in not including the parents at the August
meeting and ordered a new plan drawn up with the parents'
participation.
The meeting was held in November. The Merwins and the district
agree the tone had changed. A lot of that may have to do with
the district's new superintendent, Sam Garamendi, who began in
November.
Garamendi said privacy rules preclude him from discussing the
Merwin case, but he said his philosophy is that the district
needs to do everything reasonable to ensure families are happy
with their children's educational plans.
"The bottom line is there are needs that certain students have
that are protected by law and those laws are in place for a good
reason," Garamendi said.
Garamendi's adult daughter had special needs in high school. He
said his personal experience may give him a more ecumenical view
of special ed.
"We as educators, there are times where we want to just say this
is not really an issue," Garamendi said. "Those are real issues
as a parent. You face that very intimately."
Rising price tag
The Merwins say they are now happy with Jackson's educational
plan, and by the end of this school year he may no longer need
school aides. He now receives 10 hours of in-home tutoring a
week, funded by the state.
But the costs for special education in the school district
continue to mount.
"The issues that come up with special ed needs such as autism
are the kinds of things you can't budget for," Garamendi said.
"Clearly, they become issues of dollars and cents that impact
the school district's ability to provide programs across the
board.
"There is a drain. That doesn't mean you don't do what you have
to do."
The budget for the 2,500-student district is about $17 million,
more than $2 million of which funds special ed. Jackson's
program cost the district about $30,000 a year at its most
expensive, but because he requires less tutoring now, costs have
declined, Karlin Merwin said.
She is relieved by Garamendi's position. It means that, for at
least the rest of this school year, Jackson will receive the
treatment she believes will give him the best opportunity to
live a normal life.
"His generation is going to be a very interesting one to
follow," Karlin Merwin said in her kitchen. "It's possible that
some of these kids will be quote-unquote cured."
Then Merwin thinks about what a cure for Jackson would mean. And
what his life could be if he's not cured.
"I can't believe I'm talking about this so calmly," she said.
WHAT IS AUTISM?
Here are some answers from the Autism Society of America:
Autism is a complex developmental disability that occurs in as
many as six out of every 1,000 children.
The neurological disorder typically appears during the first
three years of life. It is four times more prevalent in boys
than girls and knows no racial, ethnic or social boundaries.
People with autism have trouble communicating and become anxious
as they try to make sense of the world around them.
Some autistic children or adults are aggressive and might injure
themselves. They often exhibit repeated body movements such as
rocking or hand flapping. They resist changes in their routines.
There is no cure for autism, but early intervention can help
dramatically improve the lives of children with autism by
teaching them strategies to cope with the manifestations of the
disability.
Information about the Lovaas Institute for Early Intervention is
available at www.lovaas.com.
Information about The Autism Society of America can be found at
www.autism-society.org.
The Sacramento chapter of Families for Early Autism Treatment
can be found at www.feat.org.
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