Jan. 27, 2014 at 2:02 PM ET
New York Democratic Sen. Charles Schumer has proposed a bill that would provide optional tracking devices for children with autism. The legislation is named for Avonte Oquendo, the New York teen who went missing in October and was confirmed dead last week.
Schumer held a press conference Sunday to introduce “Avonte’s Law” ahead of the bill’s formal introduction this week, his office said. The legislation would designate $10 million in federal funding for the voluntary program, aimed at locating missing children with autism more quickly.
Modeled after an existing tracker program for people with Alzheimer’s disease, the system Schumer proposed would provide devices that can be worn anywhere: belts, wristwatches, shoelaces.
“Making voluntary tracking devices available will help put parents at ease, and most importantly, help prevent future tragedies like Avonte’s,” Schumer said at the press conference on Sunday.
Schumer’s announcement came just one day after Oquendo’s funeral in New York. The teen’s mother, Vanessa Fontaine, appeared at the conference but was a silent presence.
Oquendo disappeared from his Queens public school on October 4, 2013. An exhaustive citywide search included flyers bearing Oquendo’s face that papered New York City lampposts, trains and subway stations for months. But the search ended tragically on January 21, when a medical examiner confirmed that human remains found along the East River belonged to the teen. The manner of death is still under investigation.
Oquendo was seen on school security cameras fleeing the school. At Sunday’s conference, Schumer pointed out that research shows 49% of children with autism wander off or run away.
"We know he left school, but the question that we seek to answer is why," said David Perecman, Oquendo’s family’s attorney, at the press conference. “What were the mistakes that were made, and how can we fix them?”
Schumer’s fix would give the Department of Justice the power to oversee the program, granting money to local police departments and other organizations for both the devices as well as education. The trackers themselves could vary – some may be activated only after the police are contacted, for example – and would cost about $80-$90, plus a few dollars per month for the tracking service.
“We’ve seen it done -- it works,” Schumer said Sunday, referencing the existing Alzheimer’s program. “All that stands in the way is funding.”
But that funding is limited, pointed out Fred Volkmar, the editor-in-chief of the Journal of Autism and Developmental Disorders.
“If you have a limited pot of money, you have to ask: Do you put it into this program or another one?” Volkmar said. “It’s not a trivial issue.”
Still, Volkmar said, Schumer’s proposal is aimed at a “sadly very common problem.” While some critics may balk at the idea of devices tracking children with autism, “you have to take a step back and remember that these are very impaired children,” he said.
Lisa Goring, an executive at the advocacy group Autism Speaks, told NBC News the legislation is a step in the right direction – but she warned that no single solution will fit every child with autism. (Another Autism Speaks executive , Michael Rosen, appeared at the press conference Sunday in support of the bill.)
“The community involvement is an essential piece to all of this – it can’t just be a tracker,” Goring said. “First and foremost, families need to be aware of big issues [with children with autism] before they become a big issue.”
Autism Speaks hopes Schumer’s bill will become law in New York, Goring said, but the group wants more wide-ranging legislation on a federal level that includes funding for practical skills like swimming lessons. Some children with autism are particularly drawn to water, leading to a high risk of drowning when they wander off. While Oquendo’s cause of death is still under investigation, authorities are reportedly exploring drowning as a possible cause, given that his body was found near a river.
Julianne Pepitone is a senior technology writer for NBC News Digital. Previously she was a staff writer at CNNMoney, where she covered large tech companies including Apple and Google, as well as the intersection of tech and media. Follow Julianne on Twitter at@julpepitoneor email her at email@example.com.