The price of structure and stability
Tuesday, January 20, 2004 (20:11:35)

Posted by sylvia

The Salt Lake Tribune 20/01/2004

By Ronnie Lynn

Few have been able to penetrate Carson Smith's world since he was 22 months old. That's when he stopped talking, became compulsive about seemingly random objects and lost his social skills.

A year later came the diagnosis: autism, a developmental disorder characterized by language difficulties, compulsive behavior and social incompetence.

The dynamics of Cheryl and Frank Smith's blended family of eight children suddenly changed. Everything began revolving around getting Carson the early therapy and instruction that research shows is so crucial for autistic children to function in a mainstream world.

With the help of teachers in the Jordan School District, the family found the Carmen B. Pingree School for Children with Autism in Salt Lake City, and their anxiety over Carson's future calmed.

The school's 2-to-1 student-to-teacher ratio and its intensive individualized programs have helped Carson learn, among other things, to play with other children and eat with a fork.

The progress comes at a price. The Smiths drained their savings to come up with the $21,000 needed for Pingree's kindergarten program this year.

To them, though, it's worth the tuition. "He said 'mom' at the Christmas pageant," Cheryl Smith said last week, her eyes brimming with tears. "I didn't know if I'd ever hear him say 'mom.' We've used all of our savings and everything we have to come up with our first 21 grand, and we'll do whatever we have to do to come up with the second 21 grand next year. He needs this structure.

"I just don't understand why I can't get the [state] money he would have gotten to go to Ridgecrest [Elementary] down the street." She pitched that wish to a Midvale lawmaker last summer, and now the Legislature will consider establishing a voucher program for students like Carson.

Republican Rep. J. Morgan Philpot is sponsoring legislation that would allow parents of students with disabilities to take a portion of the money the public school system would have spent on their children and use it to help pay for private-school tuition.

The system would be modeled after Florida's 3-year-old McKay Scholarship Program. Under Philpot's proposal, parents could collect the state portion of a school's per-pupil funding, but not the federal or local portions.

This year, the state spends $3,100 to $5,300 on each student with disabilities, depending on the severity of their needs. For example, students who require instruction in self-contained classrooms draw more funding than those who participate in pull-out programs for part of the school day. Legislative analysts still are calculating the fiscal implications of the proposal, but Philpot says the cost is secondary.

"I'd rather overappropriate than not put enough in," he said. "It's so apparent these children and families have a need."

State education officials said they were not ready to comment on the legislation, which is still being drafted. Philpot expects the bill to be available to the public by early next week.

Critics of Florida's several voucher programs say Utah can learn from their state. They advise Utah to include an audit and oversight provision to guard against misuse of funding.

"Of all our programs, the McKay program is the least objectionable," said Florida state Rep. Dan Gelber, a Democrat. "It's dealing with a very specific group of children who by definition need special attention."

It is unclear whether Philpot's bill will include an oversight provision. Regardless, he already has the support of the Smiths, school-choice advocates and Pingree administrators.

Because of the expense of such individualization, the Pingree school enrolls just 36 students in kindergarten through sixth grade. Pingree Director Pete Nicholas hopes to expand enough to take in some of the dozens of families on the school's waiting list.

"Over the years, we have had more people apply than we can accept, and that's tough," he said. "There are two major incentives for us: one, lower the cost for the family; and two, expand services."

The school also operates a publicly funded preschool program through Valley Mental Health. As for the Smiths, they want Carson to have a chance at being able to attend the same traditional public schools as their other seven children. But there is a lot for him to learn before that can happen.

Cheryl Smith needs to know that Carson won't run out the door without constant supervision. She needs to know he will recognize his name when called upon and that he understands the word 'no.'

"I have the highest hope. Our first hope is that he will be mainstreamed. I hope he can get a job, even if it's sorting screws for Boeing. You hope for everything, but we get realistic when we have to."