Inspired by the events surrounding Avonte Oquendo’s death, New York has led the way in promoting legislation that creates programs which help track autistic children with a habit of running away from parents and caregivers.
Signed into law in New York City by Mayor Bill de Blasio, “Avonte’s Law” was influenced by the tragic death of Avonte, a 14-year-old nonverbal autistic boy who went missing in October 2013 after running away from his New York City school. Avonte’s remains were found three months later.
How Avonte’s Law Helps Special Needs Students
Avonte’s Law, now known at the federal level as “Kevin and Avonte’s Law,” has garnered tremendous support from lawmakers and advocates who aim to make schools safer for special needs students.
The tracking program, which would be voluntary, is modeled after a federal program that tracks people afflicted with Alzheimer’s disease. Children with autism spectrum disorders (ASD) and other developmental disorders who are prone to “bolting” will be eligible for the program.
Since the Passing of Avonte’s Law in New York City, federal legislation and innovative measures have been put into place. Here’s a timeline of the legislative work:
- In 2015, U.S. Senator Charles Schumer proposed a federal bill inspired by Avonte’s story, and spread awareness about the need for national legislation to address student wandering;
- By the end of 2015, nearly all schools in New York City installed alarms on school doors, and implemented other measures to prevent students from being able to exit schools unnoticed;
- In 2016, a comprehensive study published in The Journal of Pediatrics highlighted the scope of wandering behavior among children with autism and intellectual disabilities, and the need for better protections in schools.
- In 2017, the federal Avonte’s Law was reintroduced as “Kevin and Avonte’s Law” to provide resources for programs which prevent wandering and help locate missing people with developmental disabilities such as autism and forms of dementia such as Alzheimer’s;
- In March 2018, President Donald Trump signed Kevin and Avonte’s Law (H.R. 4221) into federal law.
How Does the Tracking System Work?
The tracking devices can be worn as watches or anklets. The technology can also be attached to belt loops or shoelaces. The transmitter allows a caretaker to contact the manufacturer when a child goes missing; the manufacturer then contacts first responders.
Alzheimer’s patients with the technology are usually found shortly after the alarm sounds. One manufacturer reported that, on average, patients are located within 30 minutes. This effective system could make all the difference in protecting children with ASD.
Avonte Oquendo’s Legacy
In a statement, Senator Schumer said:
“The tragic end to the search for Avonte Oquendo clearly demonstrates that we need to do more to protect children with autism who are at risk of running away. Thousands of families face the awful reality each and every day that their child with autism may run away. Making voluntary tracking devices available will help put parents at ease, and most importantly, help prevent future tragedies like Avonte’s. By expanding the innovative program we currently have in place for at-risk Alzheimer’s patients, we will help thousands of families avoid what Avonte’s family just experienced.”
Liz Feld, president of the advocacy group Autism Speaks, noted that Avonte’s case was closely followed around the country:
“The incidence of wandering has reached frightening levels and individuals with autism are especially vulnerable. We need to raise awareness and increase education so that tragedies like this never happen again.”
David Perecman, the attorney for the Oquendo family, said that while the bill won’t bring Avonte back, the legislation is a fitting way to honor the 14-year-old child:
“There is no medicine to relieve the pain from the loss of a child. However, Avonte’s law will make sure that this grave loss and the pain it has wrought will not be vain.”
Protecting Children with Autism Spectrum Disorder (ASD)
Running away is a common trait among children with autism and autism spectrum disorders. Some of the reasons for this behavior include avoiding a demand or situation, sensory overload, or a desire to access someone or something that the child cares about. Children who run away usually lack impulse control and are unaware of the safety implications of their behavior.
The Interactive Autism Network and AAWARE estimate that 49% of autistic teens run away or wander off. Of that 49%, 53% run away for enough time to constitute a serious concern. About 29% wander away from school, 40% wander off from stores, and 79% flee their homes.
More than half of parents of autistic children who run away say the behavior is one of the most stressful things they have to cope with, while half said they receive little or no guidance about how to handle an autistic child who wanders off.
The Perecman Firm, P.L.L.C. is overwhelmingly proud of the strides we’ve made to protect students with developmental disabilities, and hope programs inspired by Avonte’s story are implemented nationwide. Avonte’s memory will live on in both these important legislative acts, and the scholarship our firm has created in his memory.