Around the same time, the Joneses were getting ready to enroll Jack in a public preschool in Boulder. When they contacted the school district for the first time, shortly before Jack's third birthday, the special-education coordinators assigned to him suggested that he begin his schooling at the Tiny Tim Developmental Preschool, a private school in nearby Longmont that serves children with autism and other disabilities. If a public school district cannot find an appropriate program for a special-needs child within the school system, it can place the student somewhere else at the district's cost, even if that somewhere else is a private school. Federal law requires school districts to provide transportation for students, but according to Jones, the Boulder Valley School District refused to bus Jack to and from Longmont. District officials say they routinely provide busing for special-needs kids, but they couldn't comment on Jack's case.
Jack's working parents -- John is a video producer and his wife is a financial consultant -- didn't have time to drive Jack back and forth from a program that's offered only ten hours a week. And there was another problem with the district's proposal to enroll Jack at Tiny Tim: Because Jack has a variety of medical problems, including a chronic bronchial condition, he can't be exposed to other children in a classroom setting. When he attended the summer preschool program, he caught other kids' colds. Instead of recovering after a few days, the viruses made their way into his lungs, and Jack became so ill that he refused to eat or drink; he had to be hospitalized and treated for dehydration.
For kids with special needs, public school districts are required, under the federal Individuals With Disabilities Education Act, to put together an Individualized Education Plan (IEP). The law also requires that IEPs be a joint effort between parents and the school district. By the time special-education coordinators met with the Joneses on December 4, 1997, Jack had been making rapid progress with ABA, and the Joneses wanted the technique incorporated into his education plan. But the school district had its own ideas about how to educate Jack.
"They proposed experimenting on Jack until they found a program that worked. But we already found one that worked, and we had the videotapes to prove it," Jones says. "The school district reluctantly agreed to home-schooling, but after three IEP meetings, it became clear that the district wasn't interested in pursuing ABA and that they weren't offering a program that would work. They never clarified what they planned to do. They proposed a mishmash of things: occupational, physical, speech, floor therapy -- all the things we tried for three years that didn't work. And when we asked for data showing the success of those programs, they couldn't show it to us."
The book Behavioral Intervention for Young Children With Autism, considered a must-have by ABA proponents, outlines the steps parents can take when they find themselves in a standoff with their school district. Mark Williamson, one of the contributing authors to the book and an attorney who settled his case with an East Coast school district over funding for his son's behavioral program, explains in the book that the Individuals With Disabilities Education Act requires school districts "to provide children with a free and 'appropriate' public education... There has been much dispute about what the term 'appropriate' means. Generally, the district is not required to 'maximize' your child's potential, but to provide your child with an educational program that confers a 'meaningful' level of educational benefit.
"To use an analogy, the school district is not required to provide your child with a Cadillac of an education, but only a Chevy. The good news is that if your school district cannot provide your child with a Chevy, you can go buy the Cadillac and receive reimbursement for the cost," Williamson writes. "Your job is to convince the decision makers and/or hearing officer that what the school district wants to provide doesn't even have wheels."
That's what the Joneses set out to do.
ABA works best when well-trained teachers work one-on-one with a child. But that kind of personalized attention can cost up to $30,000 a year, according to autism experts. The school district, John Jones says, never cited cost as a reason for denying Jack ABA -- and by law, cost is not allowed to factor into an IEP -- but he remains convinced that expense was the real sticking point.
When it became clear that the school district wasn't going to cooperate with him, Jones hired Yael Cohen, who has worked in the field of special education for 25 years. While studying for her master's degree in the field, Cohen received training in how to run IEP meetings for school districts; for the past twelve years, she has served as an advocate for children with special needs throughout metro Denver. When parents hire her to help them resolve disagreements with a school district, Cohen educates them about their rights and makes sure those rights are protected at IEP meetings. But she also acts as a de facto peacemaker. "I go in to meetings very often where everyone hates each other and there's no communication. I have to establish trust, get communication going and get both sides to focus on the child," she says.