Schumer's Invitation Will Draw National Attention to Critical Issue: Passage of Avonte's Law

Bill Will Create & Fund a Program To Provide Voluntary Tracking Devices for Children With Autism Spectrum Disorder, Who Often Bolt From Parents, Caregivers or Schools

U.S. Senator Charles E. Schumer today announced that he is bringing Avonte Oquendo's mother, Vanessa Fontaine, to the State of the Union as his guest. Schumer has invited Ms. Fontaine in order to draw attention to an issue that is very important to them both: passage of his legislation, called “Avonte’s Law”. Schumer’s legislation will create and fund a program to provide voluntary tracking devices and expand support services for families with children who have Autism Spectrum Disorder (ASD) or other developmental disorders in which “bolting” from parents or caregivers is common. This voluntary program would only be for families who choose to use the devices. Schumer’s decision to author and introduce legislation will ensure that the Department of Justice (DOJ) has the authority and funding to provide grants to local law enforcement entities and other organizations with an interest in assisting these children.  

Schumer was joined in New York City today by Vanessa Fontaine, Avonte's mother.

"I'm very pleased to announce that Ms. Vanessa Fontaine, Avonte Oquendo's mother, will be my guest at President Obama's State of the Union Address, which will draw much-needed national attention to an issue near and dear to our hearts: passage of ‘Avonte’s Law’. Ms. Fontaine’s trip to Washington is just one example of her great strength and courage in the face of the tragic loss of her son Avonte, and I hope that together we can rally further support for this legislation, which is essential to the families of loved ones with Autism Spectrum Disorder, and other special needs,” said Senator Schumer.

Schumer continued, “In this new Congress, I am calling for my colleagues on both sides of the aisle to work with me and help pass Avonte's Law, which will create and fund a program to provide voluntary tracking devices and expand services for children and families who have ASD or other developmental disorders in which wandering is common. My legislation will help Avonte Oquendo's memory live on, while helping to prevent any more children with autism from going missing. Ms. Fontaine is a persevering individual and I am honored that she will be my guest to the State of the Union."

In October 2013, Avonte Oquendo, a 14-year-old boy with a diagnosis of Autism Spectrum Disorder, bolted from his school in Queens. Authorities and volunteers searched for Avonte for more than three months, until his remains were tragically discovered on January 16th in College Point, Queens. In November 2013, in response to this case, Schumer called for the DOJ to expand one of their current grant programs to provide voluntary tracking devices, and make eligible children who have autism or other developmental disorders in which “bolting” from parents or caregivers is common. In January 2013, DOJ agreed to make this an eligible usage for Byrne JAG grants, which was an important step, however there is not sufficient funding in this program to provide voluntary tracking devices for individuals with ASD on any broad scale. Schumer’s legislation, Avonte’s Law, would create a permanent, $10 million grant program dedicated to purchasing these devices for individuals with ASD and other relevant disorders, as well as training to use these devices. A new grant program would also provide additional resources to local entities that find other innovative ways to assist families.


“Senator Schumer’s legislation focuses attention on an issue that gravely affects so many in the autism community,” said Autism Speaks President Liz Feld. “Tragically, a number of wandering cases often end up being fatal.  The resources and attention directed at this issue through Senator Schumer’s bill are sorely needed and an important contribution to the national dialogue that has ensued following Avonte’s heartbreaking case.  Sadly there have been far too many more tragic accidents involving wandering since Avonte's passing a year ago.”

This program is desperately needed for parents and caregivers of children with ASD, who are prone to “bolting,” running, or wandering is common among children and teens with autism. This is technically called elopement, which is the tendency to leave a safe place. Children and teens with ASD tend to run for various reasons, including avoiding a demand or situation, sensory overload, or a desire to access or be with something or someone that they care about. These individuals often have a significant lack of impulse control and may also lack safety awareness. An everyday environment for a typical developing child may create anxiety and be intolerable for a child or teen with autism; this may lead to running or wandering.
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. Most who wander are found within a few miles from home. 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.
“Avonte’s Law” would create an entirely new grant program within the Department of Justice, which would allow DOJ to award funds to local law enforcement agencies or qualified organizations that want to provide tracking devices for children with Autism and provide training and other resources to schools and local entities to help them react to a situation similar to Avonte's. The program would be modeled after DOJ’s current Alzheimer’s program that awards competitive grants to state and local law enforcement agencies that assist in locating individuals that have Alzheimer’s disease and are missing. The program would be completely voluntary for parents, and would 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 more quickly.
According to a study conducted by the Interactive Autism Network and AWAARE, 49 percent of children and teens with autism attempt to run, or wander. Of those who attempted to run, 53 percent of the children were missing long enough to cause serious concern.
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.
A summary of the bill is included below:

Avonte's Law will create an entirely new grant program within the Department of Justice that will be available to local law enforcement, schools and non-profits that aim to assist children with Autism Spectrum Disorder (ASD).  The bill will authorize $10,000,000 federal dollars in order to help fund the purchase of voluntary tracking devices for children with ASD, education and training for parents, schools and local law enforcement, as well as other innovative methods that will assist families of children who "wander" with ASD.  With this additional funding, families and local entities can work together to find the best possible solution for each individual child with ASD.

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