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Just This Month A Rochester Teen Trevyan Rowe Tragically Went Missing From School; Senator Says Trevyan’s Search Shows How Important The Passage Of This Law Is; Almost Half Of All Children With Autism Will Wander At Least Once--Incidents Could Be Prevented By Wearable Tracking Devices That Allow Law Enforcement To Locate Vulnerable Children And Adults 

Schumer’s Legislation, “Kevin & Avonte’s Law,” Will Create A Vital Grant Program To Provide Lifesaving Locator Devices To Families In Need; Schumer Has Championed This Bill Since 2014, Following The Tragic Death Of Avonte Oquendo Who Bolted From His Queens School 

Schumer: “Kevin & Avonte’s Law” Will Help Parents And Caregivers Keep Track Of At-Risk Loved Ones Prone To Wandering Away 

Today, U.S. Senate Minority Leader Charles E. Schumer announced that the just unveiled omnibus spending bill includes “Kevin & Avonte’s Law” –  a bill that will create and fund a program to provide voluntary tracking devices and expand support services for families who care for someone with autism, dementia, or other special needs, where “bolting,” “elopement,” or “wandering”  from parents or caregivers can happen.  In November, Schumer visited Mary Cariola Children’s Center in Rochester to join alongside Rochester Autism advocates and local parents and children with autism to push for passage of this bill following the disappearance of Starrlita R. Smith, a Livingston County woman with special needs who disappeared for several days from her parent’s care. As a result of the tireless efforts of local law enforcement, Ms. Smith was found and provided with a locator device through the Livingston County Sheriffs Department.  Earlier this month, Schumer again joined with Rochester Autism advocates to double down on his push to pass this legislation following the tragic disappearance of Trevyan Rowe in Rochester. Schumer first introduced the bill in response to a fatal incident that occurred in 2014, when Avonte Oquendo, a non-verbal boy with autism, bolted from his Long Island City school. U.S. Senator Amy Klobuchar is the current lead Democratic sponsor of the bill. Schumer said that preventing wandering- related tragedies is near and dear to his heart and passage of this bill will help Avonte’s memory live on, while helping to prevent any more children with autism from going missing. Now that the legislation was included in the omnibus spending bill, it must be signed into law by the President.

Just this month the tragic disappearance of Trevyan Rowe, Rochester teen with Autism who wandered away from school proves how critical Kevin and Avonte’s Law is.

“Making voluntary tracking devices available to vulnerable children with autism or adults with Alzheimer’s who are at risk of wandering will help put countless families at ease,” said Senator Schumer. "This month’s heartbreaking disappearance of Trevyan Rowe proves how critical Kevin & Avonte’s law is.  Across Western New York we have seen time and time again cases of children and adults with developmental disabilities wonder away from home, many times tragically. After Avonte Oquendo ran away from his school and went missing, I learned just how prevalent wandering is among children with autism and other developmental disorders. Since Avonte’s tragic death, I’ve pushed Congress to pass “Kevin & Avonte’s Law,” a bill that will create and fund a program to provide voluntary GPS  tracking devices to children or adults with developmental disorders, like Autism Spectrum Disorder. I joined Rochester Autism advocates and families at the Mary Cariola center to push for this vital law,  and I am proud to  have spent years speaking up for those who cannot and to have authored this important bill, which will help Avonte Oquendo and Trevyan’s memories live on, while helping to prevent other children and teens with autism from going missing. I want to thank Senator Klobuchar for all of her hard work on getting this bill into the omnibus spending bill as well.”

This legislation reauthorizes and expands an existing program designed to assist in locating Alzheimer's disease and dementia patients, known as the Missing Alzheimer's Disease Patient Alert Program, to include children with developmental disabilities, such as autism, and renames it the Missing Americans Alert Program. In expanding this program, this bill ensures dedicated Department of Justice (DOJ) grant funds are available for local law enforcement and non-profit entities to provide wandering prevention training and to implement lifesaving technology programs to find individuals who have wandered. The initiatives supported by the bill could be educational in nature or they could make non-invasive tracking technology available for those who wander. Finally, the bill provides funding for community outreach in order to create awareness around how to identify and aid children or adults with developmental disabilities who have wandered.

Sarah Milko, Executive Director of AutismUp said “Being able to finally get Kevin & Avonte’s law passed is amazing news for our Autism family community here in Rochester and beyond.  The hundreds of volunteers who mobilized for Trevyan Rowe – many of whom joined Senator Schumer to push for this new law -  know how vital it is for vulnerable children to have better access to lifesaving tracking device technology because it is one more way we can help prevent tragedies. This legislation will protect some of our most vulnerable members of society and greatly assist the parents, caregivers, and teachers entrusted with ensuring their safety.”

Schumer initially drafted this bill in 2014 after working with the mother of Avonte Oquendo, a 14-year-old boy with a diagnosis of Autism Spectrum Disorder (ASD), who bolted from his school in Queens in October 2013. Authorities and volunteers searched for Avonte for more than three months, until his remains were tragically discovered along a beach in Queens, after which law enforcement concluded he had fallen into the East River and drowned. Republican Senator Grassley of Iowa and Senator Amy Klobuchar of Minnesota have both since joined the charge after similar tragedies occurred with 9-year old Kevin Curtis Wills, a child with autism from Iowa, and 6-year old Hamza Elmi, a child with autism from Minnesota. Schumer said all could have possibly been found and saved if they were wearing a locator device, which is why Schumer has continued to push for this bill.

The Kevin & Avonte’s Law of 2018 for which Schumer is an original co-sponsor, reauthorizes and expands an existing program, the Missing Alzheimer’s Disease Patient Alert Program, to include children with a developmental disability like autism.  The new program, called the Missing Americans Alert Program, will be administered by the U.S Justice Department and provides grant funding to law enforcement agencies, public safety agencies, and non-profits for wandering prevention education work, as well as to provide caregivers with tracking devices that they and law enforcement could use to quickly locate a missing loved one. The program will be completely voluntary for parents, and will work in conjunction with schools, local law enforcement and other entities with experience in this area, such as the National Center for Missing and Exploited Children (NCMEC). Schumer stressed that these devices could be life-saving, and an important resource for parents who want them, and that additional training for schools and law enforcement could help find wandering children and adults more quickly. The bill also establishes vital privacy protections to ensure that the tracking technology is used safely and the data is kept secure.

Schumer also highlighted the disappearance of Starrlita R. Smith, a Livingston County women with special needs who disappeared for several days from her parent’s care proves how critical Kevin and Avonte’s Law is. Ms. Smith wandered away from her parent’s home in Livingston County last year, prompting a massive 3-day manhunt before she thankfully returned home and was treated for dehydration and malnourishment. She reportedly had wandered before, but never this long and did not have identification, a cell phone, or any devices that could be used to locate her. The Livingston County sheriff office launched what became a 3-day manhunt across the county and nearby regions using unmanned aerial vehicles, K-9 teams, investigators and patrol resources in the search.  Thankfully once she was found the Livingston County Sheriff’s office provided Smith’s parents with a tracking device that their daughter will now wear to prevent a repeat incident.  Livingston County is among about the two-thirds of New York State counties that participate in a tracking device program and make tracking devices available to needing caregivers.

Schumer said these wandering cases are not unique and in fact, according to the 2016 New York State Missing Persons Clearinghouse database, excluding New York City, last year Monroe County ranked third in the state for the most missing vulnerable adult cases.  Nassau County had the highest number of missing vulnerable adult cases reported with 137, followed by Westchester County with 104; Monroe County with 74 cases; Orange County with 49 cases; and Saratoga County with 42 cases.

There have also been other cases such as in May 2017, when the Town of Greece Police Department reported a 76-year-old woman with dementia had wandered off.  She was thankfully found unharmed several towns away in East Rochester. In 2016, a Hamlin man with dementia had wandered off for a second time before being found.  The first time he wandered from Hamlin, NY he was found in Connecticut by state police as he was driving the wrong way down a road. In 2016 a 59-year old Penfield woman who suffers from dementia had wandered and was missing for several hours before she was found.

According to a 2012 study by the American Academy of Pediatrics, almost half of children with autism have wandered from their caregivers at some point. A 2017 report by the National Autism Foundation revealed that between 2011 and 2016, nearly one-third of missing-person cases of those with autism resulted in death or required medical attention. According to AWAARE and the National Autism Association, of these children, 74 percent run or wander from their own home or from someone else’s home, 40 percent run or wander from stores and 29 percent run or wander from schools. Close calls with traffic injuries were reported for 65 percent of the missing children and close calls with drowning were reported for 24 percent of the missing children. Running and wandering in children and teens with autism takes an enormous toll on families and caregivers: 56 percent of parents reported running as one of the most stressful behaviors they have had to cope with as caregivers of a child with autism. Moreover, 50 percent of parents reported receiving little guidance on preventing or addressing this common behavior.

Children, teens, and adults with developmental disabilities tend to run for various reasons, including avoiding a demand or situation, sensory overload, or a desire to access something or someone that they care about. These individuals often have a significant lack of impulse control and may also lack significant safety awareness. For example, an everyday environment for a typical developing child may create anxiety and be intolerable for a child or teen with autism or adults with developmental disabilities. During these situations, tracking technology devices are vital in helping families and caretakers find children and adults and bring them to safety.

Tracking technology includes personal locating devices that can prevent tragedy when individuals wander from school or home and are lost. Tracking devices can be worn as non-tampering wristwatches, anklets, or clipped onto belt loops or onto shoelaces. They can also be woven into specially designed clothing.  When users of the device are missing, the caregiver/school system notifies the device company and a trained emergency team responds to the area. Recovery time for Project Lifesaver users, a maker of one of the devices, averages 30 minutes, which is 95 percent less time than it takes to find those without these tracking devices. Schumer noted that these devices should be used in conjunction with other educational and behavior supports which could be funded by a DOJ grant.   

According to Schumer, these life-saving devices are currently only offered in about two-thirds of New York State’s counties. Schumer who advocated for Kevin and Avonte’s law last year while Western New York said that the passage of “Kevin and Avonte’s Law” into law will be a vital first step to ensuring lifesaving technology is available to all New York localities and beyond.