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Article of Interest - Education

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Bridges4Kids LogoDistricts Put To The Test
by Michael Kolber, The Sacramento Bee, January 2, 2004
For more articles like this visit 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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