At her Clarksburg home, Karlin
Merwin and a team of tutors have spent the past four
years teaching her son Jackson, now 9, 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 was diagnosed
as autistic when he was 4.
Jackson's tutoring sessions teach
him communication and behavioral skills that are intuitive
to non-autistic 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 the past four years, the success
of these life lessons and their high costs -- as much
as $60,000 a year per child -- threaten to overwhelm
school districts already struggling to balance their
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, but over
the years 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 grow rapidly, budgets can unexpectedly
balloon. And districts seeking to hold down costs frequently
duel with parents about how much individualized 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."
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.
Behavioral programs like the
one Jackson receives can require up to 40 hours of in-home
tutoring a week, in addition to a classroom aide.
Fueled in part by the increase
in autism, special education has been expanding for
districts large and small. Elk Grove Unified School
District, the Sacramento region's largest, has 212 children
with autism -- a 273 percent rise from only six years
ago, district Superintendent David Gordon said.
Less than 9 percent of Elk Grove's
55,000 students are in special ed, but their programs
cost $51.6 million -- 13.5 percent of the district's
budget.
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. Arnold
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
parents worried and, frequently, struggling 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.
Elk Grove's Gordon said his district
tries to settle disputes. The one hearing held this
year cost his district $80,000 in legal fees, he said.
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.
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 over
how their child should be educated. 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 last month.
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."
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 costs 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.
