Autism in America

Autism and Public Policy

Under the federal Individuals with Disabilities Education Act (IDEA), children with autism are entitled to a "free, appropriate public education." But as more autistic children reach school age, battle lines are starting to be drawn over what "appropriate" means, underscoring the need for society to find solutions that meet these young citizens' special needs.

Autism spectrum disorders are extremely difficult to address -- effective care can include a behavioral therapist, a speech therapist, an occupational or physical therapist, a nutritionist, a developmental pediatrician, a pediatric neurologist, gastrointestinal and immune-system specialists, and supplemental programs like sensory therapy (to address over- or undersensitivity to light, sound, or touch) and training in interpersonal relationships. The expense of this array of services can be staggering. Tuition for the inaugural 2006-2007 school year at the Rebecca School is a daunting $72,000. Many parents of autistic children are hiring lawyers to ensure that their school districts pay for the help their child needs.

But school boards say their backs are to the wall. Congress has typically paid only 15% to 18% of states' IDEA costs rather than the 40% it promised, according to the National Education Association in Washington, DC, and state school boards. With state and local education budgets slashed or flat, local school systems have a smaller pie to divide up at the precise time when more autistic children are enrolling."That puts the school board and communities in a difficult position," says Ted Comstock, executive director of the New Hampshire School Boards Association, speaking for a state with some of the highest increases in autism cases tracked by the Department of Education. Communities are often forced to choose between scaling back services for autistic and other special-needs children and raising property taxes, a no-win choice that can turn school board meetings into "internal warfare," he says.

The Thompson School District in Colorado made national headlines this summer when it announced plans to fight a state order to cover the costs for a local family to send their autistic son to a residential facility in Boston. The price tag, initially estimated at $150,000 annually, now looks like it will be closer to $250,000, according to Becky Jay, president of the board of education for the district, which serves the towns of Loveland and Berthoud. "For a quarter of a million dollars, we could hire five teachers," she says.

The solution Jay and many others call for -- full federal funding of IDEA -- isn't likely anytime soon. But partial relief may come from another quarter in Washington. In a town where nearly no cause draws support from both sides of the aisle, a bipartisan group of legislators this spring introduced the Combating Autism Act of 2005, which could channel money to researchers, schools, and families. Sponsored by Rick Santorum (R-PA) and Christopher Dodd (D-CT) in the Senate and Mary Bono (R-CA) and Diana DeGette (D-CO) in the House, it calls for dedicating at least $550 million over five years for research, screening, intervention, and education -- a figure that advocates call woefully low but a start. The bill is currently awaiting action in committee. "Families struggling to raise a child with autism deserve our support, and they deserve answers," says Senator Dodd. "Many autistic children will require support well into their adult lives. This clearly puts our state and local governments, and our schools, in a significant financial bind."

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