Congressman Chris Smith (NJ-04) late yesterday introduced Kevin and Avonte’s Law (H.R. 4919) to help protect children with developmental disabilities, such as autism spectrum disorder (ASD), and seniors with Alzheimer’s, who are prone to wandering. This legislation will make grants available to law enforcement agencies and non-profits to provide training to prevent wandering and implement lifesaving technology programs to find individuals who have wandered. 

     “We all empathize with a parent who learns that their child is missing, including and especially when that child has autism or another developmental disability,” said Smith, who co-chairs both the Congressional Autism Caucus and the Alzheimer’s Disease Task Force. “When children with a disability or seniors with Alzheimer’s do wander, time and training are essential to ensure their safe return.” 

    Wandering, which is also referred to as elopement, occurs when an individual leaves a safe area or a caretaker. Wandering is a safety concern for both seniors with Alzheimer’s and children with developmental disability, such as autism. It is estimated that 60 percent of individuals with Alzheimer’s and 49 percent of children with autism have wandered and we know that the results can be devastating: The legislation is named in honor of two boys with autism, Kevin Curtis and Avonte Oquendo, who both wandered from safety and tragically drowned.

     “My home state of New Jersey has the highest prevalence rate of autism in the country, with 1 in 41 children on the spectrum—a 12 percent increase in the last two years. While wandering safety and prevention programs for children with autism are currently in place and making a positive impact through law enforcement agencies, I’ve heard from constituents that there aren’t enough resources to support these critical programs and that families who need them don’t have access,”  Smith said.

    This legislation will reauthorize and expand an existing program, the Missing Alzheimer’s Disease Patient Alert Program, to include children with a developmental disability—such as autism—and rename it the “Missing Americans Alert Program.” The Missing Americans Alert Program will be used to provide grants to law enforcement agencies, public safety agencies, and non-profit organizations to promote initiatives that will reduce the risk of injury and death relating to the wandering characteristics of some children with autism, as well as individuals with Alzheimer's. Kevin and Avonte’s Law will reauthorize the program for five years, with an annual funding level of $2 million dollars.

    “Having worked with the Alzheimer’s and Autism communities for years, I know how important this program can be in advancing the health and safety of persons who wonder as well as advancing awareness and education about the problem,” Smith said. “What is shocking is that while almost half of all children with autism wander from safety, only half of those affected families have received any guidance or training on addressing the concern and keeping their child safe, according to a study published in Pediatrics.”

    Smith said the funding can be used to provide proactive educational programing to prevent wandering and assist in locating missing individuals, as well as innovative locative technology to help find those who may wander. 

    “According to the Alzheimer’s Association, half of Alzheimer’s patients who wander will suffer serious injury, sometimes fatal, if not found within the first 24 hours,” Smith noted.  “This legislation will provide funding to law enforcement agencies and non-profits to help implement locative tracking technology programs for individuals with dementia/disability and implement a notification or communications system of alerts,” he said.

    Smith’s legislation is the House companion to the Senate’s Kevin and Avonte’s Law, which was introduced on March 1, 2016 and has the support of Judiciary Committee Chairman Chuck Grassley. This much needed, bipartisan legislation is supported by a number of Alzheimer’s, children’s, and autism groups, including the Alzheimer's Association, the Alzheimer's Foundation of America, Autism Speaks, the Autism Society, the National Center for Missing & Exploited Children, and The ARC.

    “I am grateful for the support of my Alzheimer’s Task Force Co-chair, Rep. Maxine Waters (D-CA),  as well as my Coalition on Autism Research and Education Co-chair, Rep. Mike Doyle. Bringing these two communities together is the best way to work on our shared goal of protecting the vulnerable among us,” Smith said.

Rep. Maxine Waters (D-CA):

“As a strong supporter of the Missing Alzheimer’s Disease Patient Alert Program, I am proud to join my colleagues, Congressman Chris Smith and Congressman Mike Doyle, to introduce Kevin and Avonte’s Law,” said Congresswoman Waters.  “This bill will reauthorize the Missing Alzheimer’s Disease Patient Alert Program and expand it to protect children with autism and other developmental disabilities, as well as patients with Alzheimer’s disease and other forms of dementia.”

Rep. Mike Doyle (D-PA):

“I am pleased to join Reps. Chris Smith and Maxine Waters to introduce Kevin and Avonte’s Law, in the first federal effort to address the dangers of wandering for individuals with autism. This legislation will promote public safety by funding training and education programs, establishing protocols, and implementing alert systems to address this critical need.”

See What They are Saying about Kevin and Avonte’s Law:

Angela Geiger, President and CEO, Autism Speaks

“Kevin and Avonte’s Law would diminish the risk to children by awarding grants to state and local law enforcement or public safety agencies to assist in designing programs to prevent wandering and locate missing children.  A multi-faceted approach to wandering prevention and response is the best approach.  Kevin and Avonte’s Law represents such an approach.  We strongly support this legislation.”

 Charles Fuschillo, Jr, President and CEO, Alzheimer's Foundation of America:

“I want to express my gratitude to Representatives Chris Smith (R-N.J), Maxine Waters (D-Calif.) and Mike Doyle (D-Penn.), along with the original cosponsors, for introducing the Kevin and Avonte's Law of 2016. Among the behavioral challenges of persons living with dementia, wandering—and subsequently becoming lost—is a grave concern. Sixty percent of individuals with Alzheimer's disease and related dementias are likely to wander. Wanderers are vulnerable to dehydration, weather and traffic hazards, and individuals who prey on the defenseless. Up to 50 percent of people with Alzheimer’s disease who become lost will be seriously injured or die if they are not found within 24 hours.

Scott Badesch, President and CEO, Autism Society:

“We want to thank Rep. Christopher H. Smith, Rep. Maxine Waters, and Rep. Mike Doyle for taking a strong leadership position on the needed passage of Kevin and Avonte's Law.  This is an important and very much needed piece of legislation to help individuals and parents impacted by autism address wandering and the safety of each person living with autism.”

Robert Egge, Chief Public Policy Officer, Alzheimer’s Association:

“The Alzheimer’s Association applauds Congressman Smith for his continued leadership to ensure the safety and security of persons living with Alzheimer’s and other dementia,” said Robert Egge, Alzheimer’s Association Chief Public Policy Officer. “The Missing Alzheimer’s Disease Patient Alert Program is a proven success that has helped law enforcement quickly identify and reunite persons with Alzheimer’s with their families and caregivers. Its reauthorization will provide important peace of mind to families and further reduce injuries and deaths among persons living with Alzheimer’s.”

    Smith’s most recent autism law, the 2014 Autism CARES Act (PL 113-157), tasks federal agencies with undertaking a comprehensive review of current federal policies and programs impacting individuals with disabilities who transition from a school based support system to adulthood and make recommendations to improve outcomes. His first autism law, the Autism Statistics, Surveillance, Research and Epidemiology Act (Title I of the Children’s Health Act, PL 106-310)—the first major federal response to autism—passed in 2000. Smith has also authored the 2011 Combating Autism Reauthorization Act, (Public Law 112-32), which is built on by the Autism CARES Act (PL 113-157). 

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