In her former career at the American Civil Liberties Union, Kacie Buzzard worked to protect people's privacy - a mission that carried over into her personal life. She refused to allow her kids to be fingerprinted at school, and she took part in parent protests when she found out that the Texas school district in which she planned to enroll her children was going to track students with computer chips in their ID badges. "When you think about the government trying to provide services to protect somebody - even doing it with best intentions - it's always a slippery slope," Buzzard tells Newsweek.
But when she learned in January that federal funds would be available to help parents buy tracking devices for their autistic or special needs children, her attitude changed.
Buzzard is the mother of a 3½-year-old autistic girl, Caroline, who is nonverbal. This past summer, Caroline strayed out of the front door of the family's house in San Antonio, wandered into the street and made it all the way to a fenced-off pool a block away before Buzzard found her. "My instinct as a mother overtook my political thoughts about, Is the government watching and tracking?" Buzzard says. "I want to be able to find my daughter."
The government isn't giving the devices out door-to-door; instead, the Justice Department is offering grant funding for law-enforcement agencies, where families of autistic children can request tracking devices. Meanwhile, Senator Charles Schumer (D-N.Y.) is working on legislation that will go further in funding the program under Avonte's Law, named after Avonte Oquendo, an autistic 14-year-old from New York City, whose body parts were found in the East River in January, three months after he walked out of his Long Island City school.
The concept isn't new; for the past three years, there has been federal grant money for tracking adults with Alzheimer's. The nonprofit organization Project Lifesaver offers radio-frequency and GPS tracking devices that can be worn in wristbands, watches or ankle bracelets. Other companies offer tracking shoes. Project Lifesaver's technology enables "safe zones," with alarms that go off if the individual strays beyond the electronic perimeter. The program has worked with 1,300 law-enforcement agencies across the country, resulting in 2,800 rescues, according to Chief Executive Gene Saunders, a former police captain in Chesapeake, Va., who started the organization after seeing missing Alzheimer's patients end up dead. Approximately 46 percent of such patients who wander off will die if they are not found within 24 hours, according to a study published in the American Journal of Alzheimer's Disease and Other Dementias.
But the discussion of GPS monitoring has raised questions about personal liberties - especially when it comes to those who don't have the wherewithal to know they are being tracked. There are individuals with autism who lead relatively normal lives, and for them, "GPS trackers without consent would be a violation of privacy," says Adam D. Moore, an associate professor in the Information School and Program on Values in Society at the University of Washington.
Then there are those with severe autism, who need to be looked after constantly. Surveillance in such circumstances seems morally permissible, Moore says. "Few would claim that there is a violation of individual privacy when parents use baby monitors to keep an ear or eye on a newborn."
Danielle Citron, a privacy expert and professor of law at the University of Maryland, supports the program for parents, with caveats. There are risks, including unauthorized sharing of information - which could leave it open to child predators and stalkers. Identity theft is also high among children. A 2011 study, Child Identity Theft, out of the Carnegie Mellon CyLab analyzed child identity theft cases and found that 4,311, or 10.2 percent, had someone else using their Social Security number, and child IDs were used to buy homes, cars, open credit accounts, gain jobs, and get driver's licenses.
David Gray, also a law professor at the University of Maryland, raises questions about government access. "There is really no firewall now between private third-party access and government access," Gray tells Newsweek. "So, if parents attach these devices to their children, and a third party has access to information for the device, then the government can get that information simply by asking - there is no need for a warrant."
For Buzzard, government access through GPS technology is an ongoing concern, but it has been overshadowed by the immediate concern of things like her daughter's new ability to open gates installed for her safety, inside and outside. The doors to their house beep when opened, and the family has added door locks Caroline can't reach.
But her parents can't watch her 24/7. Last summer, Caroline was on medication, which triggered obsessive-compulsive behavior, causing her to play with containers for three to four hours at a time. She became violent if her parents took a container away, biting her nails until they bled. They decided to take her off the medication, and on her first day off meds, Caroline wandered outside. Thinking her daughter was downstairs with her dad, Buzzard heard the door beep and assumed it was her husband taking out the trash. He came upstairs three minutes later.
"Just checking to make sure Caroline is with you," he said.
They bolted outside, and found her quickly, by their neighbor's outdoor pool. "If Caroline was bigger and could move faster, I wouldn't have even known where to begin to look," Buzzard says.
A study published in Pediatrics showed that nearly half of autistic children have a tendency to wander, and many of them end up in hazardous situations, gravitating toward bodies of water or into traffic.
While working at the ACLU as a field organizer and in media communications, Buzzard opposed the reauthorization of the Patriot Act - which allows wiretaps and government search of business records - the Foreign Intelligence Surveillance Act - which allows the government to survey international phone calls and emails - and the REAL ID Act- which sets national standards for identification cards. She was relieved when her children's Northside Independent School District dropped its plans to track students after national outcry sparked protests online and locally as well as a lawsuit from a student who for religious reasons refused to wear the tracker.
Buzzard believes this issue is different. "We need to protect our daughter," she says. "Is it better to do it without the government? Yes. I don't want to take away the rights of a person with a disability. But for me, it was an easy decision."