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Neurodiversity, Alzheimer's advocates share their opinions on Project Lifesaver



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IU Kelley School of Business lecturer Nejla Routsong stands Oct. 7 near Franklin Hall. Routsong is a lecturer at the IU Kelley School of Business in the Management and Entrepreneurship program. Alex Deryn Buy Photos

A small bracelet containing a trackable transmitter has caused recent debate in Bloomington's Alzheimer's disease and neurodiverse communities.

Project Lifesaver is a program that tracks users with cognitive disorders when they get lost.  Nejla Routsong, a visiting lecturer at the IU Kelley School of Business and faculty advisor of the IU Neurodiversity Coalition, said she isn't sure the device is legal.

Routsong said one concern is that anyone wearing this device may be compromising their Fourth Amendment rights. 

"The first and most important thing you have a right to privacy of is your own body," said Routsong, who used to work in data analytics and digital marketing. "Once you use a product like this, you usually waive all rights to your data."

She said wearers may not be in a position to give consent, but they should be aware of what happens to their tracking data. She said data of the user's location could potentially be sold by Project Lifesaver for profit.

Abe Shapiro, the president of the IU Neurodiversity Coalition who has mild Asperger’s syndrome and ADHD, said he has never wandered, but he empathizes with the caregivers of people who do. He said he knows Project Lifesaver is used to give peace of mind, but he doesn’t think that should outweigh the wearer's comfort. 

"The sensitivity aspect is probably the cornerstone in tackling this situation for me, especially because people on the spectrum may experience sensory overload," Shapiro said.

According to University of California San Francisco research on sensory processing disorders, more than 90% of children with autism experience hyposensitivity or hypersensitivity.

Kyrianna Hoffses, Project Lifesaver's director of media and public relations, said it is very common for wearers to have a sensitivity issue, and Project Lifesaver will work with the caregiver to desensitize the wearer. Ways to do that include having the client keep the device on one additional minute each day until they have gained comfortability. 

Amanda Mosier is an Alzheimer's educator and community health coordinator at IU Health Hospital's Alzheimer's Resource Service. She said Monroe County coordinator Paul Ford is trained to recognize if a Project Lifesaver client's wrist or ankle will swell, and the placement of the device depends on that assessment.

Mosier said Project Lifesaver is a great program that helps to provide a safe space in Bloomington. 

"Sometimes if you don't get to witness what it does, it doesn't really register to you how important it is," Mosier said.

Mosier talks to clients of the Alzheimer's Resource Service about Project Lifesaver early in their diagnosis, she said. It's because the free program may seem less frightening to the person wearing the device if they know what it does and how it helps people.

A "fog" in the mind may lead to Alzheimer's patients wondering where they are or what they are doing, Mosier said. This is often when they get lost.

"It's kind of like being a detective trying to figure out, 'Why is this person wandering away?'" Mosier said.

Mosier said enrollment in Project Lifesaver allows clients with Alzheimer's to stay independent at home longer.

Shapiro said he wishes there were more options for people who wander. He said it makes more sense for a transmitter to be in someone's favorite shirt or hat.

Shapiro said he doesn't like the idea of an ankle bracelet because it criminalizes the wearer. 

"Making somebody on the spectrum wear an ankle bracelet is the equivalent of condemning them for something that is a daily struggle," Shapiro said. 

Routsong said she worries a stigma of the device could harm someone going out in public or applying for a job. She said she believes it too closely resembles a criminal monitoring device.

"Because it's evocative of the criminal justice system, it will likely have adverse effects on wearers of color worse than what it would have for white wearers," Routsong said.

CORRECTION: A former version of this article misidentified Routsong's title and position. It also misclassified her work with data analytics and digital marketing. The IDS regrets these errors.

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