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Just This Month, Two NYC Children With Autism Went Wandering, But Were Thankfully Found Safe; Incidents Could Have Been Prevented By Wearable Tracking Devices That Allow Law Enforcement To Locate Vulnerable Children And Adults – Almost Half Of Children With Autism Will Wander At Least Once

Schumer’s Legislation, “Kevin & Avonte’s Law,” Which Just Passed the Senate, Would Create A Vital Grant Program To Provide Families With Lifesaving Locator Devices

Schumer: Now, House Must Act & Quickly Pass “Kevin & Avonte’s Law” to 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 Senate passage of his legislation, “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. Just this month, a non-verbal child with autism wandered away from his school in Harlem. The same week, a Bronx child with autism was found wandering around a subway station. 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. Schumer today said that the issue of wandering 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.

“Making voluntary tracking devices available to vulnerable children with autism who are at risk of wandering will help put countless families at ease,” said Senator Schumer. “This legislation, ‘Kevin & Avonte’s Law,’ will create and fund a program to provide voluntary tracking devices and expand services for children and families with ASD or other developmental disorders in which wandering is common. I hope that the House of Representatives will rally together to finally pass this legislation, which is essential to the families of loved ones with Autism Spectrum Disorder and other special needs, into law. Passage of this bill will help Avonte Oquendo’s memory live on, while helping to prevent any more children with autism from going missing.”

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. 

Schumer initially drafted this bill in 2014 after working with the mother of Avonte Oqendo, 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 been found and saved if they were wearing a locator device, which is why Schumer has continued to push for Senate passage of this bill.

S. 2070, the Kevin & Avonte’s Law of 2017 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.

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. 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.  

Unfortunately, according to Schumer these life-saving devices are currently only offered in about two-thirds of New York State’s counties. Schumer said that the Senate passage of Kevin and Avonte’s Law is a vital first step to ensuring lifesaving technology is available to all New York localities and beyond.