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Autism, Alzheimer's spotlight: Could tracking program bring peace of mind to caregivers?

  • Wednesday, April 23, 2014

Provided At right, nine-year-old Wesley Jeter is autistic with elopement behaviors that give him the urge to wander away from loved ones. His sister Lily, 12, is one of several family members who keep an eye on him.

When most people hear “elopement,” they think of a couple running away to Las Vegas for the weekend to get married.

When Stefanie Neuner, mom to an 8-year-old son with autism, hears the word, she thinks of her son’s disorder and his need to run away from the safety of loved ones.

“He just has this need to go,” she said. “When they do elope some children really do not have any intention of coming back, and my son is one of them … He’s been running for three years now, and luckily there’s always been someone standing there to catch him, but when he gets older and bigger it’s going to be hard to stop him.”

She gives God the credit for the family’s good luck, but Neuner is just one of many caregivers who has wondered if there’s a better solution.

She found a solution in Project Lifesaver, a nonprofit organization that developed a police tracking system for people with autism, dementia and other disabilities.

To participate, families purchase bands containing GPS transmitters and attach them to the client’s wrist or ankle. The bands are virtually indestructible and cannot be removed by hand. When they enroll, data on the client is provided to the participating law enforcement agency and the larger Project Lifesaver database.

Caregivers can call the law enforcement agency when the client goes missing, at which point the transmitter is activated and a trained response team is sent to the wanderer’s area. According to the Project Lifesaver website, the average search time is 30 minutes.

Charleston County Sheriff’s Office is the only local law enforcement agency that uses the program, but since discovering it, Neuner and other concerned caregivers have been trying to bring the program to Dorchester County and Summerville.

Damita Jeter, whose 9-year-old son is autistic and has the elopement disorder, discovered Project Lifesaver through the National Autism Society.

“I just started doing some research on my own to see what we had in this area and I was surprised to see that Charleston County had it and Dorchester County did not,” she said. “We have a lot of support in the community for children with special needs, through groups like the Miracle League and others, but we don’t have Project Lifesaver.”

Both mothers said they have reached out to the Dorchester County Sheriff’s Office, but have gotten limited or no responses.

The women have also pursued political action; Neuner said she has gone to Columbia to advocate for the program and others like it with local state Reps. Jenny Horne and Patsy Knight.

Autism caregivers aren’t the only ones lobbying to get the program in Dorchester County.

The Summerville-based Alzheimer’s respite care facility, The ARK, also has goals of bringing the program to the area, according to Executive Director Peg Lahmeyer.

“We definitely would [want to be a part of bringing Project Lifesaver here],” she said. “We already have a program put together for law enforcement training.”

Currently The ARK is using the program to educate Orangeburg County Sheriff’s Office deputies on the project, which was recently adopted there.

There is a cost associated with Project Lifesaver, which Lahmeyer said might deter families with already high caregiving expenses from participating, but she said the organization would adopt a scholarship to help finance participation if the project was implemented locally.

“It really is a wonderful program, and it can be for any caregiver, of a child, an amputee, a person with dementia… It’s about taking care of the caregiver, not the person they’re caring for.”

Summerville Town Councilman Bob Jackson said he has some knowledge of the program through his connection with The ARK and would support bringing Project Lifesaver to Summerville, or even bringing it jointly to Summerville Police Department and Dorchester County Sheriff’s Office.

Summerville Police Department Public Information Officer Cpt. Jon Rogers said while he had never heard of the project, it “sounds like a great program.”

Sgt. Fletcher Ferguson has been the Project Lifesaver coordinator with the Charleston County Sheriff’s Office for nearly a year.

“My hope is that Dorchester and Berkeley do implement it,” he said.

Within CCSO, Sgt. Ferguson said he and a team of officers trained to respond to a Project Lifesaver call manage the program, interact with the clients regularly and perform maintenance checks.

To use the program, the client has to have a transmitter band and the law enforcement agency has to have a receiver, which he said is in the $1,000 range. The transmitter bands cost approximately $350.

Right now CCSO does not charge clients to participate in Project Lifesaver, but he said if the department follows through with planned project expansions it may have to begin collecting fees for the transmitters.

Sgt. Ferguson said he’s only heard of a few times when CCSO had to use Project Lifesaver, all before he became coordinator, but he considers that a good thing.

“If I had a family member in this condition I would want them in that program because it gives you a starting point… They could be anywhere but at least you have some way of locating them. Calling by name is not always going to work, the person may hide instead. I would definitely recommend it,” he said.

Lahmeyer confirmed The ARK trains officers who are searching for a lost dementia patient to avoid yelling their name, as it may frighten or threaten some lost patients.

Jeter also said the program can be crucial for finding eloping children, as many with autism are nonverbal.

Two Horry County law enforcement groups – Myrtle Beach PD and Horry County Fire Rescue – use the program and have found great success with it, according to Monique Clement of SOS Health Care, Inc.

SOS Health Care brought the program to Horry County in 2007. Since then the group has fundraised and coordinated with law enforcement to ensure Project Lifesaver’s success.

She said they currently have 20 clients enrolled in the project through SOS Health Care – four have Alzheimer’s and the remainder are autistic children – but there may be more enrolled through Horry County.

She admitted there have been some problems with resistant elderly patients who cut the transmitter bands off, but SOS has encountered no problems with children and the bands.

Although the cost is high, Clement said SOS has had a lot of fundraising success so no clients have to pay for their enrollment: “So far we’ve done really well. People believe in it and they donate to it.”

She expects the same would happen if implemented in Dorchester County, and said she believes “it’s a really great program” for the area.

The experiential benefits and recommendations from expert organizations have created a long list of support for implementing the project in Dorchester County, and yet many local Project Lifesaver hopefuls said they’ve had a hard time getting law enforcement on board.

“Not only is [Project Lifesaver] not in place, but we seem to be getting nowhere,” Jeter said. “I know that you can’t implement it immediately, but I was just surprised that we couldn’t get in touch with anybody who would even want to discuss it with us. And it’s not just me, there’s a group of us.

“It kind of amazes me, we’ve chipped our pets to make sure to keep our animals safe but when it comes to our children we’re not taking any steps that we need to make sure our children and most vulnerable citizens are safe.”

However, when the Journal Scene talked with Dorchester County Sheriff’s Office they seemed to be aware of the project and up to speed on its benefits.

Chief Deputy Sam Richardson said the sheriff is interested in the program: “If we even have one child, that’s enough of a concern,” he said.

Sheriff L. C. Knight also expressed interest in the program, but said DCSO won’t implement anything until the office has proper resources to manage it.

“We’ve been out and searched for a person for hours, so we’d be very interested [in participating], it’s just a matter of working out how we can do it and make it work in a professional manner,” he said. “I don’t want to adopt it and then not have a person here to run it.”

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