Senators Chuck Schumer of New York and Chuck Grassley of Iowa have introduced legislation to help the families of loved ones with autism, Alzheimer’s disease, and other conditions that make people prone to wandering.

Kevin and Avonte’s Law is named for two boys with autism who died after wandering. Avonte Oquendo, age 14, drowned in the East River after leaving his New York City school in 2014. Kevin Wills, age 9, drowned in 2008 after jumping into Iowa’s Raccoon River.

The bill would allow grants from the Justice Department to be used for training and education programs operated by nonprofit organizations and law enforcement agencies. The bill would also provide resources to support emergency protocols and tracking technology to promote the safety of individuals who may wander.

After the death of Avonte Oquendo, Sen. Schumer said that Avonte’s wandering was not an isolated incident, and technological solutions such as tracking devices could help. Tracking devices may be attached to the clothing of a person prone to wandering or bolting, whether the person is a child with autism or a senior with Alzheimer’s disease or other dementia. Sen. Schumer’s original bill was called Avonte’s Law.

The introduction of Kevin and Avonte’s Law was applauded by the Autism Safety Coalition, which is made up of several national organizations. The coalition said that in 2015, 31 people with autism died after wandering away from safety.

Read more about the history Avonte’s Law from our special needs blog:

• Electronic Tracking Devices in Wake of Avonte (by Marion Walsh, Esq., & Stacy Sadove, Esq.)
• Avonte’s Law Addresses School Safety for Children with Special Needs

Learn more about our special needs planning and special education advocacy services at www.littmankrooks.com or www.specialneedsnewyork.com.

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The U.S. Department of Justice recently announced that a federal grant program that provides electronic tracking devices for adults with Alzheimer’s disease has been expanded to apply to children with autism.

The announcement came after tragedy struck Queens, New York, where the remains of Avonte Oquendo, a 14-year-old autistic boy, were recently discovered. Avonte wandered away from his school on October 4, 2013. A massive search, lasting over three months, resulted in the discovery of the boy’s body in the East River on January 16.

The voluntary program will allow parents of children with autism and other developmental disorders to obtain a tracking device through local law enforcement agencies and nonprofit groups. The devices may be worn as bracelets or anklets and attached to belt loops or shoelaces.

A recent study showed that 49 percent of children and teens with autism have attempted to run or wander from their caretakers. Recovery time of an individual wearing a tracking device averages as much as 95 percent less than that of an individual without a tracking device.

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The proposed legislation is called “Avonte’s law,” after Avonte Oquendo, a 14-year-old boy with autism who was found dead after he disappeared from his school in Queens.

The law would increase funding for a Department of Justice program that provides grants to police departments and other groups that allow them to supply tracking devices for people with Alzheimer’s disease. The law would allocate $10 million to expand the program to cover children with autism. The tracking device cost between $80 and $90 to purchase and a few dollars per month to operate. Interested parents would have free access to the devices, which can be sewn into clothing or worn around the wrist.

Use of the devices would be the decision of the parents, and local governments would decide exactly how they would be implemented. The devices can be programmed in different ways, for instance to alert authorities automatically when a child leaves a certain perimeter such as school grounds, or to become activated only when authorities are notified.

Avonte Oquendo disappeared from his school by the Queens waterfront in October. He had no prior history of running away. Due to severe autism, he was not able to communicate verbally, making him more vulnerable to danger. The New York Police Department, along with the boy’s family and volunteers, searched for him by every available means. Bloodhounds were put on the scent, divers searched the East River, and neighbors and subway riders saw the boy’s face on posters and heard announcements regarding his disappearance. His remains were discovered along the East River shoreline in January. DNA testing confirmed the identity of the body, and an investigation continues into the cause of death.

According to Sen. Schumer, the tracking equipment is “a high-tech solution to an age-old problem.” Research indicates that almost 50 percent of children with autism are prone to wandering or bolting, often to get away from noises that overstimulate them. Many are drawn to bodies of water because they seem soothing, which creates a significant drowning risk.

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The death of Avonte Oquendo, a 14 year old boy with  autism has shocked and saddened NYC and it surrounding area.  Avonte disappeared from his school in October and his remains were  discovered in the East River, after he fled school .

What can be done to prevent a future tragedy? Among other measures, Avonte’s loss has sparked the debate of using technology to track  children with special needs who  are flight risks.  Senator Charles E. Schumer recently proposed “Avonte’s Law,” which would finance a program to provide optional electronic tracking devices to be worn by children with autism.  Senator Schumer noted that Avonte’s running away was not an isolated incident.  Many students with disabilities pose flight risks, and technological solutions may be available.

What is an Electronic Tracking Device?

An electronic tracking device uses radio frequencies to track the location of individuals.  The  device can be worn like a bracelet or attached to clothing or shoelaces, and enables parents and law enforcement agencies to locate a child who  goes missing, within minutes.  Wearable radio frequency identification devices for children have been on the market for nearly a decade. However, their popularity has only recently come to the forefront of discussion with the increase in children whom are supposed to be under direct supervision going missing. Avonte Oquendo represents  just one of many students who have left school premises without notice.

Tracking Devices Used for Alzheimer’s Patients

Programs similar to this already exist for patients diagnosed with Alzheimer’s disease, and here at Littman Krooks LLP we often recommend many of our clients to engage in the use of tracking devices for elderly parents or relatives that have a tendency to wander. Opponents argue that a tracking device  further objectifies patients with this sensitive disease and leaves them even more powerless. However, proponents of the devices argue that it gives the caregivers and family a sense of security that they will always be able to find their loved one.

Devices Create Debate over Privacy Rights of Children with Special Needs

The proliferation of radio frequency devices is a serious concern and raises  many questions  with respect to tracking children. Should these devices solely be used on special needs children who are flight risks, or would these devices benefit all school children? Moreover, do these devices pose a significant risk to the privacy rights of our children?

Proponents of the tracking devices for use with all students argue that the devices offer security advantages if used in schools, as school officials would immediately know if a student didn’t show up for class and could notify parents quickly if a child was missing from school. School officials could also quickly identify anyone who didn’t belong on campus if they weren’t wearing a tracking device. Schools would also be able to more efficiently and accurately track and verify attendance of their students.

In 2005, a local school in Sutter California attempted to implement a tracking system for all of its students. However, in this case the parents were not informed of the tracking system until it was in place. The tracking system was ultimately abandoned as the ACLU and parents stated various concerns including that the transmitter would jeopardize the safety and security of children by broadcasting identity and location information to outside individuals with a chip reader and subject students to demeaning tracking of their movements.  Again, in San Antonio, Texas in 2012, Northside Independent School attempted to implement a similar program which was ultimately quashed by outrage from parents from lack of informed consent.

Unlike the systems in Sutter and Northside, Akins High School in Austin Texas in 2013 implemented a voluntary tracking program for its students to help raise awareness of truancy issues and prompt students to attend class. The Austin program required parental written consent. Thus far users of the program have stated that it has increased attendance among users and they have not seen negative effects.   Opponents of tracking children compare it to that of tracking of cattle or a system right out of an Orwell novel.  They believe that it is too much of an infringement on the rights of their children and do not believe that it is a proper method to monitor where and when a child moves.

If we raise ethical concerns regarding the tracking of the entire population of students, should we still be tracking special needs children? Specifically, targeting tracking children with autism raises the implication that children are uniquely helpless and should thus be subject to surveillance.  Does this infringe on their privacy rights more than others? Moreover, equipping children with autism with a tracking device, even voluntarily could open the flood gates for tracking devices to be used on all groups of at-risk kids including suicidal teens; domestic violence victims; and children with developmental disorders. Proponents argue what is the problem with opening the flood gates? If tracking works then we should use all available technology to keep our kids safe? The issue of targeting one group of children for tracking rather than all children can lead to issues of inequality.

Parents Must be Informed of Student’s Privacy Rights

Moreover, parents should be well informed of the risks of placing such a device on their child.  The idea of keeping our children safe through the use of technology, inherently clashes with the desire for privacy.  The Supreme Court recently looked at the issue of privacy rights with respect to GPS devices in United States v. Jones 132 S. Ct. 945 (2012). In Jones, the Supreme Court Justices agreed that the Defendant accused of drug trafficking was searched when the police attached a Global Positioning System (GPS) device to his car. However, the Court could not come to a decision on what constituted the search. Was it the attachment of the device or was it long-term monitoring. Justice Alito, concurring, argued that the monitoring was a violation of Jones’s reasonable expectation of privacy.

The Court’s landmark decision in Katz v. United States, 389 U.S.347 (1967), altered the focus of the Fourth Amendment from property to privacy rights. The use of GPS and tracking devices both to track a person’s property and themselves, will inevitably lead to future Supreme Court rulings with respect to the expectation of privacy. Specifically, if one voluntarily places a tracking device on themselves, by giving tracking information to a third party, do they still have an expectation of privacy? With each advance in technology, the courts and Congress are asked balance privacy issues.  It will take many future cases and statutes to determine what those rights are.  With respect to tracking devices on children, parents need to be aware of the risks that placing a device of their child may have.

The Use of Tracking Devices Should Remain an Individualized Decision

Many parents will argue  that the risk of the invasion of privacy is far outweighed by the safety and security they can gain for their child by employing one of these devices. With ever evolving technology and laws, parents need to keep appraised of changes. With the development of a database of information established on children, families need to be aware their information might be shared with other agencies and/or third parties. While these programs may ultimately do more good than harm, parents still need to be mindful regarding the accessibility and availability of their children’s private information.

We support Avonte’s Law as a voluntary protection for children with severe disabilities, but with the strong caveat that legislators must be mindful of privacy concerns. We urge legislators to adopt the law but draft it to maximize privacy protections for our most vulnerable students and absolutely ensure that it is voluntary and that a child only will wear a tracking device if his or her parents provide informed consent.  Parents need to carefully evaluate and understand the infringement of privacy for their child and make an informed decision.

In the interim, be proactive with your child.  Work with your school district on developing a program .  You and your child’s IEP team should evaluate whether your child poses a flight risk and include such information on your child’s IEP as a special alert and in their present levels of achievement and functional performance.   Make sure you alert all of your child’s teachers.  .  Ask about whether your child requires a functional behavioral  well as an intervention plan with regard to your child wandering is an extremely important conversation that should be had with the school district.

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