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Kevin and Avonte's law helps address issues of wandering for people with autism

Saving lives with Kevin and Avonte's law
Posted at 11:38 PM, Apr 26, 2018

Tonia Ferguson and her 16-year-old son, Jared, are settling into their new home in Rosedale.

It’s been an adjustment for Jared, who has autism and Down Syndrome, to live in a new place. Ferguson will never forget when they first moved into their house and the moment that changed her life.

“I had been up all night I ended up falling asleep in my bedroom,” said Ferguson.

“Typically, what he would do in the morning is he would come into my bedroom and kiss me on the cheek. I woke up frantically because that kiss wasn't there.”

Ferguson ran into every room of the house and Jared was no where to be found.

“There was no sign (of him) and it was as if the world just stopped.”

When she couldn't find him in the house, Ferguson ran outside. Her panic and fear grew by the second. They were living in a new neighborhood and she didn't have a chance to meet the neighbors. Jared didn’t know the neighborhood either.

After what felt like an eternity of searching, Ferguson saw a neighbor with Jared, walking him toward her house.

“I see my neighbor coming down the road with him in his arms in his pajamas with his little teddy bear. I think his thinking was ‘Oh my gosh, this is not my home. I’m ready to go’ and he just opened the door and left,” she said.

"Life actually changed. I never thought that would even be something that my family would be faced with."

Ferguson is grateful Jared came home safe and sound that day, but not every story of a child with autism wandering from home ends this way. Like the stories of Avonte Oquendo and Kevin Wills.

Oquendo was a 14-year-old autistic boy who wandered away from his school in Queens, New York in 2013. His body was found months later in a river. Wills was a nine-year-old autistic boy who wandered from his home in Jefferson, Iowa in 2008 and drowned in a nearby river.

“A great percentage of children who wander drown," said Lisa Wiederlight, the executive director SafeMinds, an autism advocacy group.

Wiederlight says there is no clear explanation as to why people with autism wander and wander to water. SafeMinds plans to do more research into it this year. She says there are a few theories.

“Some thoughts behind it are sensory issues and seeking water which gives them deep pressure and it feels good when you’re in the water,” she said.

The National Autism Association released a study on wandering and the autism spectrum disorder (ASD). It found that from 2011 to 2016, more than 800 ASD children wandered from their home or a safe environment. Of that number, 139 children died.

According to the research, Maryland has some of the highest number of cases of wandering by ASD children in the country, yet none of them ended in death.

“I think it’s so important for law enforcement to have training and to know that individuals in their community who have autism and how that’s manifested,” Wiederlight said.

After Oquendo’s death, New York Senator Chuck Schumer began working on a bill to give funding to law enforcement and health care agencies for training and addressing issues of wandering for conditions like autism and dementia.

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It would also make tracking devices more accessible to families who voluntarily want to use them to keep tabs on loved one who wander.

In 2015, SafeMinds, along with the National Autism Association, Autism Speaks and the Autism Society of America, formed the Autism Safety Coalition and came together to get Kevinand Avonte’s Law passed. Iowa Senator Chuck Grassley co-sponsored the bill.

In March of 2018, the law was signed by President Trump as part of a larger omnibus spending bill. For Wiederlight, the moment Kevin and Avonte’s Law was passed was bittersweet.

“I think it was happiness but also sadness that we couldn't do it fast enough for the children who died in the past year,” she said.

Tracking devices are nothing new in Calvert County. 12 years ago, the sheriff’s department started Project LifeSaver to help families who have loved ones who wander.

“Project LifeSaver boasts just peace of mind. It’s kind of like insurance, you pay every month but you really hope never to use it,” said Deputy First Class Andre Mitchell, who works with Project LifeSaver.

For a fee, a family receives a tracking device the size of a wrist watch. A person is given a nylon or leather band, depending on how often they try to remove it. The tracker uses radio frequency and can pick up a person’s location within a mile.

Deputies will come to the home to change the batteries every one to two months. Mitchell says the find time with a tracking device is about 30 minutes.

“Your find time is greatly diminished, your personnel hours, your overtime, your resources, you’re not going use all of those,” Mitchell said.

“This bill passing is incredible because it really is going to put resources in the hands of departments that didn't have that before.”

Wiederlight said Baltimore County Police are in the early stages of starting a similar program but are not ready to go live with it at this time.

Back at Ferguson’s home, she has taken extra steps to better secure her home and prevent Jared from wandering again. She hopes Kevin and Avonte’s Law will encourage other families and communities to take the necessary steps to keep their children safe and alive.

“That’s the end goal, to save kids lives. And that’s why as an advocate, that’s why I do what I do,” she said.

“Because I would never want any family member to have to end up burying their kid because of what if. We have to save lives.”