New York Senator, Charles “Chuck” Schumer (D-N.Y.) has sponsored Senate Bill 2386, the “Avonte’s Law Act of 2014”. This legislation, which amends the Omnibus Crime Control and Safe Streets Act of 1968 and named for teenager Avonte Oquendo, provides $10M in funding to law enforcement to support the use of tracking devices for those with Autism Spectrum Disorder (ASD) or other disabilities that cause the sufferer to run away from parents or caregivers. Grant monies are to be used to provide training, resources, emergency protocols, and response tools to reduce the risk of injury and death to those whose disabilities include wandering characteristics.
Case History The tragic case of Avonte Oquendo made national headlines when the 14-year-old, non-verbal, Autistic student left the lunch group he was with in school and ran away through an open door in the school building. Avonte was new to the school and was prone to wandering as documented by his Individual Education Plan (IEP); protocols in place to optimize his learning and the overall learning environment to best suit his needs. In addition to the IEP, his mother, Vanessa Fontaine, completed a form requested by his teacher where Fontaine explicitly details Avonte’s inclination to run: “Questions or concerns that I have include: Safety concerns – Please make sure you keep an eye out he likes to run. Need 1:1 supervisor. Will leave the building.”
On October 4, 2013, Fontaine’s words proved prophetic when Avonte saw his opportunity to explore the world around him. School security footage shows him leaving his class’ procession in the hallway, walking past a security desk where the guard was speaking with another student and a caregiver, and running out of the school.
Approximately 18 minutes after Avonte’s departure, the classroom paraprofessional noticed his absence and school officials were notified that he was missing. After several missteps, his parents and the police were called and a search was initiated for the missing student. Initial inaccurate reports from the school security officer limited the search to the school as she told officials the child never left the building saying that she saw him run upstairs. Thinking that her beloved son was afraid and hiding somewhere in the building, his mother used the school’s public address system to try to coax Avonte out from hiding. Gaining access to the video recording was hampered as the principal was unavailable and the person left in charge did not have immediate access to the necessary security codes. By the time a search of the surrounding area was initiated almost two hours had elapsed and Avonte was outside and alone in an area with which he had only limited familiarity.
Teams of responders and volunteers canvassed every section of the city in an attempt to locate Avonte. Subway lines were shut down to allow for tunnel searches, to no avail. Pictures of Avonte were posted in store windows, on electric poles, in subway stations, everywhere possible. As time passed, more pleas were made by the parents and family and tremendous efforts were executed by the police, volunteers, and other search workers.
Sadly, time passed without any news or sightings of Avonte. It wasn’t until January 2014 – three months later – that a photography student walking along the water at Powells Cove in College Point, Queens found what appeared to be skeletal remains. She notified police and a more in-depth search of the area was performed producing additional remains. DNA testing confirmed the worst; the remains were those of Avonte Oquendo.
Pursuit of Justice Avonte’s mother, Vanessa Fontaine, asserts that the school was neglectful in their responsibility to protect her son. She actively advocated on his behalf from the time he was in grade school and did all she could to ensure he was in a secure environment when he was out of her care. Through her attorney, David Perecman, Fontaine is seeking justice through the court system to hold the school district responsible and ensure no other parent has to suffer this type of tragedy.
In addition to the civil suit, Fontaine has served as an extremely vocal advocate of legislation to provide tracking devices and enhanced training for first responders, school staff, and anyone working with disabled populations prone to wandering. The City of New York and Mayor Bill de Blasio have enacted a local-level Avonte’s Law. Through this legislation, by May 2015, the Department of Education is to evaluate doors at all elementary and District 75 schools serving students with special needs to determine the need for door alarms. The law requires annual safety protocol reports get filed with the city. Though the federal initiative shares the same name, its scope is completely different than the one adopted by the city council in that it protects individual autistic and disabled individuals by way of tracking devices. As mentioned previously, an Autism diagnosis brings with it a wide range of subcategories and symptoms making ASD indicate uniquely in different individuals.
A 2012 study funded by Autism Speaks through the Interactive Autism Network and published in the Journal of the American Academy of Pediatrics reported that nearly half(49%) of children over age four with ASD engage in straying behaviors. Of those who wandered, 26% were gone long enough to cause concern. It should be stressed that when these children wander, they are in danger of bodily harm. Just considering the information gathered from the survey respondents, 24% of those that strayed from caregivers were in danger of drowning while another 65% were in danger of vehicle/traffic injury. The tendency to stray is tied to the severity of the ASD diagnosis. For every 10 point increase on the Social Responsiveness T-score, there is an approximate 9% increase in wandering risk. Liz Feld, President of Autism Speaks says, “For every parent of a child with autism, this is the worst nightmare. The reality of wandering is something our community lives with every single day.”
Senator Schumer was lead to sponsor “Avonte’s Law” as a result of the national dialogue sparked by this case. The reality is that for those of us not directly affected by ASD we may be woefully unaware of the statistics or the full spectrum of the potential for tragedy faced by this population and those who love them.
To advance awareness, Senator Schumer took the opportunity to ask that Vanessa Fontaine accompany him to the State of the Union Address where the importance of this issue could be brought to the forefront of the American conversation. Though she remains heartbroken at the loss of her son, Fontaine continues to fiercely advocate for measures aimed at preventing other families from experiencing a similar tragedy. In this way, Avonte Oquendo lives on. His mother’s strength and his legacy serve to potentially impact millions in the ASD community and save the lives of an untold number vulnerable people. Thanks to the efforts of Fontaine and Schumer, our world is moving closer to avoiding another Avonte Oquendo tragedy.