Last March, the 2018 federal budget included a provision to increase funding to a program that helps prevent and protect against wandering, a critical safety concern for many with autism and Alzheimer’s disease. As the budget wound its way through Congress, family caregivers celebrated across the country. But nearly a year later, the $2 million authorized by lawmakers to fund the measure still has not been allocated. The overall spending bill is caught up in a game of political football.
Advocates say they are still hopeful that the provision will be funded, despite the budget impasse that brought Congress to a stand still and caused a three-week government shutdown last month. They have continued calling and writing lawmakers to press their case that these families need help.
“The sooner the better,” said Lori McIlwain, executive director for the National Autism Association. “This is the time of year as the weather turns warmer that more kids start going missing and we have more tragedies,” she said.
About 60 percent of people with Alzheimer’s and almost 50 percent of people with autism wander. Between 2011 and 2016, more than 800 people with autism were reported missing after wandering, according to a report by the National Autism Association. Nearly one in five of those people was later found dead. Children under 5 faced the highest risk; their cases ended in death nearly 60 percent of the time.
Kevin and Avonte’s law aims to prevent wandering by offering community grants through the Department of Justice to train caregivers and law enforcement to prevent wandering through better education and stronger relationships. The law also funds tracking devices to help locate repeat wanderers. It expands an existing wandering-prevention law that for two decades has focused exclusively on people with Alzheimer’s.
The bill was named for Kevin Curtis Willis who was 9-years old when he disappeared from school in Jefferson, Iowa in 2008 and was found a few days later in the Raccoon River. In 2013, Avonte Oquendo wandered away from his school in Queens. After a highly publicized, three-month search, his body was recovered from the East River in New York.
For many with autism, wandering can fulfill an “unmet need,” said Emily Mulligan, manager of the Autism Response Team at Autism Speaks during a December webinar about the law. This could be a need for less stimulation or a need to relive a past routine such as going to work or school.
Many with autism have specific fascinations or fixations. A common one is water. Lori McIlwain, said her son with autism had a fascination with highway exit signs. She dedicated herself to advocating for wandering prevention after her 7-year old son slipped away from school and headed for the highway.
Fortunately, a motorist picked up her son, who could not at the time explain where he was from, and drove him to a nearby school and contacted law enforcement, who eventually helped track down McIlwain. Through that ordeal and others, McIlwain realized that schools and law enforcement had little to no understanding of how to communicate with and protect people with autism.
Her son wore a tracking device for seven years, one safety measure that did help, she said.
For repeat wanderers, the law targets funds so that more caregivers can have access to non-invasive tracking devices that alert law enforcement, first responders and parents during a wandering emergency and locate the person through radio frequencies.
Kyrianna Hoffses, a spokesperson for Project Lifesaver, a Florida-based non-profit, which sells tracking devices, said funds from the new law could help lower the cost of the devices and expand training programs to more public safety agencies so they can use them effectively.
Organizations like Project Lifesaver and the National Autism Association are concerned that without federal support they cannot come close to helping all the people that need it.
“We will continue to push for this,” McIlwain said.
Rebecca Howell is an undergraduate student at the University of Maryland, College Park studying History. She is also an intern with Memorywell.