Ashley was a remarkable girl. When she was just two, she could work a computer and solve puzzles like a five-year-old. But she couldn't talk and didn't respond when her name was called. She seemed to connect only with Barney, the purple dinosaur.
A specialist diagnosed her as autistic. Her mom, Sharon Ruben, then stumbled onto a revolutionary therapy based on developing Ashley's auditory skills, in part by having her listen to Mozart. By age 51/2, she was a happy child in a Montessori school, reading and writing as well as the other children. Ruben's 2004 book, "Awakening Ashley," sparked a fierce debate on how best to treat autism. She claimed huge success for her method. However, researchers countered that there was little evidence and no controlled trial to prove that it actually worked.
Ashley's case frames a huge controversy. In 1975, the federal Individuals with Disabilities Education Act promised a free, quality education to all children, including those with disabilities. The federal government pledged to pay 40 percent of the cost of educating disabled students, but state and local governments have complained ever since that the feds have reneged on their promise. They continued making those arguments as the law was reauthorized and signed by President George W. Bush last year.
Numbers would seem to back up the complaints. According to the National Education Association, federal aid covers less than 20 percent of special ed costs, leaving state and local school districts with a $10.6 billion annual shortfall. Meanwhile, the number of special ed children has nearly doubled since 1977, to about 6 million, and the growth rate is increasing. Special-needs pupils made up 12 percent of all schoolchildren in 2003. Experts estimate that within a decade, as many as 15 percent of all students might be identified as disabled.
The average cost of educating a normal child is $7,552 a year, according to the NEA. For those with special needs, the average cost is $16,921. As the number of disabled grows, so does the fiscal strain--especially in smaller school districts.
When Congress debated the act's renewal in 2004, it recommitted the federal government to paying 40 percent of special ed costs by 2011. "All students in America can learn," President Bush said in December. "All of us understand we have an obligation to make sure no child is left behind in America."
But skeptics wondered how, with deficit red ink flowing as far as the eye can see, the feds could make good on the promise to double special ed funding. The law contains a formula but no appropriation to fund it.
Behind the budget battle lie two tough issues that divide local school districts and the parents of disabled children. One is the problem of identification. Is the number of special education students increasing because, for some reason, America is producing more disabled children? No, experts counter. What's happening is that school systems and health providers are identifying more children as having learning disabilities. Once identified, they are entitled to special education.
Nowhere does that issue loom larger than in the "autism crisis," as some have christened it. Health authorities once estimated that autism affected 1 in 10,000 children. Now, estimates are closer to 1 in 500, and some studies put autism rates as high as 1 in every 150 children. Some autism treatments cost $40,000 per student. Many state officials worry that their generous treatment programs have created "autism magnets" that draw families to their states for care--much as "welfare magnet" states did in the days before the 1996 welfare reform law.
The other tough issue is determining which techniques work. Worried parents tend to grasp at untested ideas they hear about in support groups or see on TV. Research lags the appearance of new ideas and, because of the complexity of developmental problems, often provides fuzzy answers at best. For example, the American Speech-Language- Hearing Association, which provides credentials for training programs, concluded that the general technique used for Ashley "does not meet scientific standards for efficacy."
School boards thus often find themselves torn between the moving pleas of parents for sometimes-untested techniques and the huge financial burden on taxpayers that elaborate techniques can create. Equity issues creep in as well. African-Americans are identified as mentally retarded at more than twice the rate of white children. The 2004 federal law encourages earlier testing to identify special-needs students, in the hope of closing that gap.
But the updated law leaves the big question unanswered: How do we educate the large and growing number of learning-disabled children? The feds are reluctant to give state and local governments a blank check. State and local officials are looking to the feds to make good on their 40 percent commitment.
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