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The Bill for Alexander

There aren't easy answers for autism's rising costs.




Andre and Alexander Scott, 9-year-old fraternal twins, look sharp in matching red polos, blue jean shorts and black Nikes. As I sit at the kitchen table with them, though, differences become obvious. Andre does his homework, pausing to converse with more poise than many college students. Alexander, who is autistic, checks my pockets, jingles my keys and expresses his needs in the form of questions. "Want strawberry yogurt? Want strawberry yogurt?" he says. "Have to go bathroom?"



Another big difference: Educating Alexander costs taxpayers several times more than educating Andre. Alexander spends half of his school day in a heavily staffed autism support classroom, says their mother, Anna Marie Scott of Bethel Park, and half in regular classes with an aide. After school, therapists and counselors come to their home to help Alexander, at a taxpayer-paid cost of about $22,500 a year. He also gets speech therapy and summer school at government expense.


More and more kids are being diagnosed with autism (See City Paper Main Feature: "When Joshua Lost His Words," Sept. 15), which impairs perception and communication. As their numbers have soared, so has the tab for educating them. In Pennsylvania, the cost of special classrooms and in-home instruction for autistics almost certainly exceeds a budget-straining $500 million a year -- even as parents say the state's programs may not be enough to make their kids into tomorrow's taxpayers.


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When diagnosed with autism, children typically become eligible for two forms of help. The first is in-home therapy, called wraparound, designed to teach everything from drawing straight lines to basic social skills. The second is an individualized education, including state-paid preschool, and an in-class aide or placement in an autism support classroom in primary school. Neither is cheap.


In the third-through-fifth-grade autism support classroom at Pittsburgh's Brookline Elementary School, there are nearly as many adults as children. There are four to eight kids assigned to teacher Joyce Dzadovsky's room at any given time, and two to four adults. It seems extravagant, until you watch Dzadovsky's efforts to have a boy and a girl read Chipmunks Do What Chipmunks Do. She's constantly working to keep them focused, and occasionally holding up a "No Humming Please" sign. A true-false test that most kids would waltz through proves a struggle; to most autistics, the idea that someone would deliberately say something false doesn't come easy.


Dzadovsky's kids spend some periods in regular classes, but come here for intensive help in other subjects. "Large group settings are very overwhelming" for autistics, explains Dzadovsky. "The kids need the close proximity [to a teacher] to focus."


Eight years ago, Dzadovsky's was the only autism support classroom in the Pittsburgh public schools. Now there are 13. The district spends about $3.3 million on its autism support program, or almost $19,000 for each of its approximately 175 students classified as autistic. Though that doesn't include overhead and expenses associated with those kids' time in regular classes, it's already double what the district spends per typical kid.


There are 723 students getting autism support in Allegheny County's other schools, and about 7,200 statewide. There are no definitive statewide figures on autism education spending, but if other districts' costs resemble Pittsburgh's, then the bill would easily exceed $100 million.


In wraparound, a therapeutic support specialist (TSS) teaches a child in the home for a set number of hours per week, and a Behavioral Support Consultant (BSC) makes sure all of the child's services are coordinated. The state pays nonprofit agencies $30 an hour for the TSS's time and $49 or $63 an hour for the BSC, depending on the BSC's educational level. In the 2002-03 fiscal year, the state paid $452 million to provide wraparound to 40,387 children -- an average of more than $11,000 per kid.


Add the educational and wrap-around costs together, and the bill approaches $30,000 per autistic child per year. "If we don't [educate autistics], the state -- meaning you and I -- will have to support them," says Nancy Minshew, research director of the University of Pittsburgh's Center of Excellence in Autism Research. "And we've got this tidal wave of kids now. It's going to bankrupt the schools. It's going to bankrupt the state, if we don't find or design jobs that they can do."


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The autism wave consists largely of kids born in the last 10 years. The wave shows no sign of breaking, so last year the state created a task force made up half of family members of autistics and half of researchers, therapy providers, educators and administrators. The task force found that autism services are badly fragmented, and full of gaps.


Autistic kids get two different plans, one for their home-based services and one for school, and they're sometimes very different or even conflicting. (This month the state took one step toward coordinating welfare and education spending, when it created a new position, the Office of Child Development, which spans both departments.) Services for autistics are handled by at least four different state agencies. As kids like Alexander get older, there's woefully little assistance to help them to function in the community, get vocational training or find jobs -- keys for keeping challenged kids from becoming institutionalized adults. "The needs are going to change, but you still need support," says Anna Marie Scott.


New programs would cost more money. "Everyone is concerned about the budget," says Scott Johnson, executive director of the state Senate Public Health and Welfare Committee. "That's part of the reason that things are going a little more slowly than they might."


The task force suggested that the state design a comprehensive autism program, and ask Washington to pay for it by waiving the federal government's mental health funding rules. Such waivers are often the subjects of intense negotiations between states and Washington, and getting one would be "a tough fight," says Congressman Mike Doyle, a Pittsburgh Democrat and co-chair of the House Autism Caucus.


"It's a necessary investment now, because these kids are individuals with enormous abilities that we can't afford to waste," says Dan Torisky, president of the Autism Society of Pittsburgh. His autistic son, Eddie, lives in a state-paid group home at 47, and works at a print shop and pays taxes that cover a fraction of the cost, Torisky notes.


Back at the Scott home, Alexander brings over a toy car and magnetic track. Andre easily fashioned the track into a loop, revved up the car and made it run laps. Alexander wants to do the same, but can't figure it out. "Help me?" he asks.


Anna Marie says Alexander is getting the help he needs, but his future is still a question mark. "Andre has asked, 'How's my brother going to be? Will he ever get married? Will he ever be on his own?'" Anna Marie recounts. "I don't know what level Alexander will reach, but I want him to be able to do without us someday."

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