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Autism's money holes

Parents of autistic kids find gaps in state education support

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Three year-old Peyton recently found a blue crayon and a blank canvas on the beige wall in the foyer of her family's Meridian home.

Then, crayon met wall. Peyton's mom, Laura Lineberry, found a roughly three-by-four foot mural. Stick-figured people stood, complete with noses, smiles and pupils in the eyes.

Laura didn't punish Peyton.

"It's a huge development step, so I'm happy she drew on the walls," Lineberry said, noting the detail in the picture. "I don't know how I'm ever going to erase it."

To Lineberry, the drawing represents the strides Peyton has made since being diagnosed with autism. Intensive Behavioral Intervention (IBI) therapy and constant encouragement from her family has helped Peyton develop verbally and learn a repertoire of sign language and social skills many would take for granted.

"When (the therapist) is gone, I don't know what I'll do," Lineberry said.

The state-funded therapy that has helped Peyton blossom will end next year, when she turns four. The state mandates that children can only access the program for three years. When it's gone, it's up to Peyton's parents and schools to provide for most of her developmental needs. But Lineberry and other parents are not sure public schools have the resources, so they're taking the matter into their own hands. And they're finding it's a costly challenge.

"There's no one treatment that is the treatment. And it's a lot of trial and error," said Lori Greer, who has an 8-year-old son with autism. "And time is precious."

Time is precious: Studies have shown that the earlier an autistic child receives development therapy, the better. That's why Greer and other parents don't want to wait for public schools to round up the resources needed to give autistic children an extra hand. Now, they are setting their sights on creating the Community Bridges School, just for autistic children.

"[Drew] has made tremendous strides. It's not just IBI it's also been the [public] schools. I have to applaud them for their efforts."

But Greer said that even the best trained teachers can't give autistic children everything they need. Autism and Autism Spectrum Disorders (ASDs) include a range of developmental disabilities characterized by repetitive behaviors and social and communication problems. People with autism and ASDs typically have difficulty learning, paying attention and are often hyper-sensitive.

Take the noise levels at an average school.

"A playground with 600 kids is overwhelming for me. So for a child with sensitivity issues, it is difficult to filter out all of the sounds and focus on the activity they're doing." Greer said. "It's difficult, when you're in an overcrowded classroom, to learn."

Low light and noise levels, calming color schemes and small classrooms are some of the benefits an alternative school could offer.

Phyllis Reff had to retain an attorney to resolve one of her challenges. She chooses her words carefully when she speaks about her daughter's schooling. She refrains from using the words "best education," for example. She found if she demanded her 16-year-old daughter receive the "best education" possible she she'd get nowhere. The law requires only that schools provide children with an "appropriate" education.

But Reff's idea of what constitutes an "appropriate" education doesn't always mesh with those who are providing that education. Boise and Meridian educators say they tailor programs to meet student's individual needs. But Reff said that when she tried to steer educators toward developing a curriculum that addressed her daughter's needs, her voice was muted.

"They do not talk to parents nicely," Reff said of meetings with Boise school educators. "They need an attitude change, and now they have it, because I have an attorney sitting next to me."

Reff said she pushed for teachers to create an education plan that would, among other things, help her academically high-achieving daughter learn social and self-help skills. The tools, training and resources needed to educate autistic children don't always exist, she said.

Marta Sandmeyer, Boise School District special education supervisor, said funding is an age-old problem for many public schools. And she said most parents want to see more spent on their children's education.

Eric Exline of Meridian School District said special education funding does not always keep pace with federal requirements. When Congress passed the Education for All Handicapped Children Act of 1975, Gerald Ford said the law contained costly administrative requirements that would assert federal control over local schools. Ford reluctantly approved the bill that established a due process for educating children with disabilities, saying he was signing one of the biggest unfunded mandates into law.

It costs Meridian schools about $24,000, on average, to educate a special-needs student. Federal funds cover about $1,000 of that cost. The rest has to come from the state.

Funds also have to keep up with an ever-growing population of students with autism. Ten years ago, Boise School District served 18 children with autism. Last year, the district served 133 even though the district's general population has shrunk during the last decade. Some attribute the increase to a higher prevalence of the disorder while others cite more awareness and better diagnostic methods. Roughly 5.7 out of every 1,000 school-aged children have been diagnosed with autism, according to the Centers for Disease Control.

"We're constantly trying to keep up with the needs of students," Sandmeyer said.

In 2001 Idaho established an early intervention IBI therapy program to teach children the skills they need to function in schools, said Tom Shanahan, Idaho Health and Welfare spokesperson. This year, IBI therapists will serve 540 children to the tune of about $16 million. But kids can only access this program for three years. Parents say Bridges Community School could fill the gap and put all the services kids need under one roof. But funding still remains an unfilled need. A July 8 fundraiser aims to help fill that need, but organizers don't have an opening date or estimates on the cost to operate the school. They say they don't want high tuition to keep children out of the school.

"Autism doesn't discriminate, so we don't want to discriminate," Greer said.

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