The Indiana Daily Student published an article Oct. 7 with the headline “Neurodiversity, Alzheimer's advocates share their opinions on Project Lifesaver.” The article was a follow-up story to another published Oct. 2 with the headline “Project Lifesaver may decrease search time for wandering, lost users.”
These articles explored Project Lifesaver, an organization that provides tracking systems to local agencies with trained members around the county. The tracking systems are used to help locate clients who are prone to wandering, such as people with cognitive disabilities or memory-loss.
After doing research on the program, editors at the IDS decided to split the Project Lifesaver story into two articles: one that would explore the use of the program in Monroe County and another that offered perspectives from neurodiversity and Alzheimer's advocates about their perspectives of the devices.
The first article mentioned the second would be coming soon after the first’s publication. However, when the second article was published, the IDS failed to make it clear to our readers that it was the second part of the series.
In the second article, Nejla Routsong, the faculty adviser for the IU Neurodiversity Coalition and a visiting lecturer at the Kelley School of Business, spoke about concerns she had regarding if wearer data from Project Lifesaver devices was kept private. The IDS did not follow up with Project Lifesaver to clarify what the program does with client data.
The IDS apologizes for any confusion this may have caused. We have taken steps to clarify that the two articles are linked.
To clarify questions about the program, the IDS spoke with Routsong, Van Buren Township Fire Department Lt. Paul Ford and Kyrianna Hoffses, the Project Lifesaver director of media and public relations, on how the devices work and what data the organization collects.
The Devices
When an agency signs up to work with Project Lifesaver, it gets a receiver with an antenna and transmitters with plastic covers that can be attached to clients’ wrists or ankles. While the transmitters send out radio signals every 1-2 seconds, they are only located when wearers are reported missing, Hoffses said.
“A common misconception is that they can just open up an app, and there's a map, and it says, 'Okay, this person's at the corner of, you know, Main and Fifth,'” she said. “Not how that works.”
In order for a transmitter to be located, she said the Project Lifesaver member who has the receiver goes to the wearer's last known locations and enters a transmitter-specific frequency code into the device. The receiver can pick up the transmitter's signal for distances up to a mile, depending on the region.
The receiver uses a chirp varying in volume to direct searchers toward the transmitter. When a Project Lifesaver wearer is found, the receiver is turned off.
Ford runs the Monroe County Project Lifesaver through the Van Buren Township Fire Department. He said all fire departments and law enforcement agencies in the county participate in the program. When a caregiver calls the police to report a wearer missing, he said the police department will notify the area’s fire department with the receiver so both agencies are looking for the wearer.
Another Project Lifesaver device, called the PLI-PR1 Perimeter, also uses radio frequencies to alert caregivers to potential wandering, Hoffses said. They are typically used by clients already signed up for the Project Lifesaver program through an agency and are meant to add an extra layer of protection for wearers.
Instead of having a receiver that is only turned on when the wearer is lost, Perimeter devices have a hand-held device that communicates the transmitter's signal every 15 seconds.
According to the Project Lifesaver website, the device can read the transmitter’s signal from 100-300 feet away. If a wearer exceeds this distance and the device cannot read the transmitter’s signal after 20 seconds, the device will alert a caregiver through audio and visual cues and will not stop doing so until the wearer is back in range.
Ford said while he has helped clients obtain the Perimeter device, he does not work with the devices.
The Data
Project Lifesaver receivers cannot give or record the exact location of the individual, Hoffses said.
“We wouldn't want to, for one, but our technology does not have the ability to collect location data,” she said. “So there is no way that we could sell that. And as a nonprofit, we wouldn’t.”
Ford also emphasized there is no location data for the program to collect.
Hoffses said Project Lifesaver member organizations are asked to submit after-incident reports to the main organization, but not all do. She said the reports are used to help the organization record rescues and demonstrate them to help secure funding for the nonprofit.
All reported incidents are recorded on the Project Lifesaver website, with information such as date, location, diagnosis of the wearer and recovery time included.
Project Lifesaver does maintain a database of client information for officers gathered from caregivers, including basic demographic information, such as name, frequency number and a picture. The files also include wearer-specific information to help locate them, such as things wearers enjoy or personal histories to understand where and when people with Alzheimer's or dementia may think they are.
All client files are kept secure in the Project Lifesaver database, Hoffses said.
“Access to the portal is only granted to specified users with proper permission, and its security prevents from potential hacking and improper use of private information,” Hoffses said.
Ford said only Monroe County program personnel can access Monroe County client data. Personnel from another county cannot access the Monroe County client data, and Monroe County member officers cannot access other counties’ data.
Routsong said before speaking to the IDS for the second article in the series, she read both the first article as well as looked over the Project Lifesaver website, but said neither resource gave her a detailed understanding of the device.
After learning more about the device, Routsong said she appreciated the effort Project Lifesaver puts into protecting client privacy.
“Our job as advocates for our community is to be skeptical and voice all possible concerns with any product that is targeted to our community,” Routsong said.
Routsong said she also wished the program’s website would address its privacy policy, comfort for wearers and minimization of potential negative social stigma compared to other tracking devices on the market targeted to neurodiverse individuals.
Other tracking devices marketed for people with autism or dementia are available that use different locating technologies, such as GPS. Project Lifesaver’s website does describe the advantages and disadvantages of different locating technologies, although it does not describe specific devices that use these technologies.
“I’m grateful to the reporter for giving voice to our concerns regarding how this new industry poses risks to exploiting our community,” Routsong said. “Our coalition wants to help prevent that.”
Routsong said she still had concerns about how Project Lifesaver defined cognitive disabilities and where the company drew the line on distributing devices.
Hoffses said Project Lifesaver’s main organization and individual agencies have guidelines for who can be enrolled in the program. Typically those enrolled will have been diagnosed with a cognitive disability by a medical professional. She said some clients are denied to the program, such as people who live by themselves and who wouldn’t have a caregiver to report them missing.
To join the Monroe County program, Ford said the potential wearers need to have succeeded in wandering away before.
“Unfortunately, I know it only takes one time to get in trouble,” he said.
If the police are called to find a person, he said they will offer to connect the person's family or caregiver with Ford. If the family or caregiver agrees, the police will give their contact information to Ford, who will talk with them about the program.
“Sometimes they put them in the program, sometimes they don’t,” he said. “I don’t hound them. I don’t call them back. If they want it once I’ve reached out to them, they can contact me at that point.”
Ford said he also speaks with people who reach out to him about the program directly.
Ford said he talks to the wearer to explain the device and gives tips to the family or caregiver on how to prevent wandering, such as using different devices that monitor door activity or providing distractions for those attempting to leave.
In the second article, Routsong said she was concerned about those wearing Project Lifesaver transmitters would be profiled as criminals since the transmitters resemble criminal monitoring devices. Ford said he prefers to attach the devices on wearers’ ankles since it can prevent them from cutting the transmitters off, and they can be easily covered by a sock.
Some wearers, particularly those with dementia, do cut off their devices, Ford said. He said those who remove them typically do around three times before they get used to the device.
“Usually by the third time within two or three week period, if they've cut it off, I usually end up taking them out of the program because I'm not forcing anybody to wear this,” he said.
Ford said his main concern is keeping people safe.
“You know, my first goal is to keep a person from becoming lost,” he said. “That's my first goal. If they do become lost, that's when we use this, to locate them."
