It’s taken months, but a bill aimed at helping adults with dementia and Alzheimer’s who face risk of injury due to unaccompanied wandering – which was expanded to include children with autism — finally passed the House and now sits in the Senate for consideration.
H.R. 4919, the “Missing Alzheimer’s Disease Patient Alert Program Reauthorization Act of 2016,” also known as “Kevin and Avonte’s Law,” was introduced in the House in April as a grant program “to reduce injury and death of missing Americans with dementia and developmental disabilities,” the text stated. Section Two of the measure provides for education and outreach in conjunction with the activities of the National Center for Missing and Exploited Children, “including cases involving children with development disabilities such as autism,” the text continues.
Specifically, the legislation opens the door for guardians, parents and legal caretakers of those with dementia, developmental disabilities and now, autism, to affix tracking devices to their charges. It requires the attorney general to establish guidelines for when tracking devices can be used, who can legally access the data from the tracking devices, which type of tracking devices are the most non-invasive and suitable for use, and at what point the civil rights of those being tracked are infringed. The measure also calls for special training for law enforcement officials so they can “recognize signs of abuse during interactions with applicants for tracking devices,” and for the establishment of a proper channel to field complaints, the text states.
The concern from the civil libertarian side is that the tracking system might be applied to those who don’t truly need it, and that information used in the program could wind up in a larger database, accessible by officials outside the medical field – like a police officer, for example, who might tap into the data to conduct unwarranted surveillance operations.
H.R. 4919 does include this stipulation, however: “Any tracking data provided by tracking devices issued under this program may not be used by a federal entity to create a database,” it reads.
Republican Rep. Bob Goodlatte, chairman of the House Judiciary Committee, applauded the bill’s passage.
“It’s a family’s worst nightmare when a loved one goes missing,” he said in a statement shortly after the House vote, “especially if their child has autism or their parent has Alzheimer’s. Children with autism and people with Alzheimer’s are prone to wandering and the results can be devastating if they are not found immediately.”
The bill was actually dubbed “Kevin and Avonte’s” in memory of Kevin Curtis and Avonte Oquendo, two autistic boys who wandered from their caretakers and ultimately drowned. According to Goodlatte, up to 60 percent of the 5.3 million in America who are diagnosed with Alzheimer’s and nearly half of the 1 in 68 children who are diagnosed with autism have wandered from their caretakers and guardians.
The National Autism Association, meanwhile, reports that accidental drownings are the cause of 90 percent of deaths due to wandering of those with autism.
“Kevin and Avonte’s Law would help provide much-needed police training and resources to not only prevent and respond to [autism] wandering, but to also help police identify the signs of autism, interact with those who have autism [and] provide critical safeguards that will help save lives,” the NAA said. “In short, we need this bill.”
The bill was first brought into the House in April under the sponsorship of Rep. Chris Smith, R-N.J. It passed in mid-December, with a largely nonpartisan voice, 346-66, and now sits in the hands of the Senate for consideration.