Grassley-backed bill addressing Alzheimer’s and autism set for reauthorization

DES MOINES — For parents of children with autism, the risk of their children wandering away from supervision is high: It happens with almost half of children with the condition at least once, according to Autism Speaks.

Legislation addressing that risk, backed by Iowa U.S. Sen. Chuck Grassley, a Republican, is set to be reauthorized as part of the National Defense Authorization Act.

Grassley joined Democratic Sen. Amy Klobuchar of Minnesota, another co-sponsor of the law, to highlight the reauthorization of the Missing Americans Alert Program in a news conference Thursday. The legislation, originally passed in 2018, provides resources for law enforcement and families of children with autism, as well as adults with Alzheimer’s disease and other developmental disabilities in the event that they wander away from caregivers. The reauthorization maintains the provisions and funding levels from 2018.

Advocates for people with autism and Alzheimer’s disease said during the press conference the legislation funds vital tools to help locate missing people.

Dubbed “Kevin and Avonte’s Law,” the law is named, in part, for Kevin Curtis Willis, a 9-year-old Iowa boy with autism who wandered from his parents’ care in 2008 and drowned in the Raccoon River in Jefferson, Iowa. It is also named for Avonte Oquendo, a 14-year-old with autism from New York who went missing from school and was later found dead.

“These tragic losses really taught us to do better for these individuals and families,” Grassley said during the conference. “And this legislation is part of that ‘doing better.’”

The law provides an Amber Alert-style system that notifies a community when a person with autism, Alzheimer’s or another developmental disability has gone missing. It also provides funding for agencies and local law enforcement to develop programs or training to prevent wandering and locate missing people.

The law provided $1.7 million in funding for projects this year, Klobuchar said.

“This law has been instrumental in helping to reunite families with loved ones,” Grassley said.

One common method of prevention, Klobuchar said, involves using tracking bracelets that can tell a person’s location if they wander.

Kris Steinmetz, the executive director of the Autism Society of Iowa, said she knew the Willis family, and Kevin’s death was a shock to the whole Jefferson community.

“The Jefferson Middle School gym was completely filled, and visiting there we started to realize … we needed to do something with the tragedy,” she said.

Using the provisions in the bill, Steinmetz said the organization has been training first responders to help them prepare to respond to situations involving people with autism.

“This has evolved into a lot of different things,” she said. “And I think the most important is that the first responders… have the information as to what they can do, who they can call (and) different trainings and different programs for tracking devices.”

For people with Alzheimer’s disease, 60 percent will wander at least once, according to the Alzheimer’s Association.

“It’s very common for a person with dementia to experience profound disorientation and wander from homes and care facilities, and many do so repeatedly,” said Robert Freeman, the vice president of public policy for the Minnesota-North Dakota Alzheimer’s Association.