The federal government would pay for GPS tracking devices for autistic children under legislation proposed Sunday by Sen. Chuck Schumer and named for a New York City boy who wandered away from his school three months ago and was found dead in a city river.
"Avonte's Law," named for 14-year-old Avonte Oquendo, would provide $10 million to pay for the high-tech device that could be worn on the wrist, kept in a wallet or sewn into clothing.
Avonte walked away from his Queens school in October and his body was found in the East River earlier this month. About 200 mourners gathered Saturday for his funeral and investigators are still trying to determine how he died.
"We can't change the past, but we can take necessary steps to ensure we learn from this and put in place programs that will ensure that no parent and no child has to go through a similar nightmare in the future," Schumer said at a news conference in his Manhattan office, joined by Avonte's mother, Vanessa Fontaine, and grandmother Doris McCoy.
About half of autistic children are prone to wandering, according to research published in 2012 in the journal Pediatrics, and wandering has led to the deaths of more than 60 autistic children since 2008. About 90 percent of the wandering fatalities in recent years have been drowning victims, according to the National Autism Association.
Groups that advocate for autism-affected families have made it a priority to increase awareness of wandering. The study found that half of parents with autistic children never received advice or guidance from a professional on how to cope with wandering. Experts have recommended precautionary measures, including autistic children wearing ID bracelets or tracking devices.
"Lord knows, if we had known within a matter of minutes where this boy was when he had walked out in a school, we might not be here," said David Perecman, an attorney for Avonte's family who has been speaking on their behalf. "Never again."
Avonte's mother smiled faintly as she listened to Schumer's proposal, which he said might have saved her son's life. He plans to introduce the legislation on Monday.
The program would resemble one that Schumer said has successfully kept track of people with Alzheimer's disease using a computer-programmed alert system. That program signals police departments when someone wearing the device leaves a place where they are supposed to be.
Each device costs about $85, plus a few dollars in monthly fees, the senator said, adding that hundreds of families with autistic children already have used privately funded tracking devices.
Michael Rosen, executive director of New York-based Autism Speaks, attended the news conference with his 26-year-old autistic son, Nicky.
As a child, "he would race across the street to a neighbor's living room ... and he'd end up all of a sudden tearing apart their living room, or he'd be across the street on a roof because he was attracted to heights," Rosen said of his son. "You can't turn your back for one second."
One in 88 American children had some form of autism spectrum disorder in 2008, according to the latest estimate from the Centers for Disease Control and Prevention. That's a 78 percent increase compared to 2002.
Rosen and other experts say the increase is due to better and broader diagnoses, plus awareness and other unknown factors. The group supports Schumer's legislation.