Autistic Children and Alzheimer’s Patients Who Wander — Do Need Help. But Does it Require the State to Install a Tracking Device in People Against their Will?

In 2008, after wandering from his home. Kevin Curtis Wills, nine years old,  jumped into Iowa’s Raccoon River and drowned. Six years later, after having left school, 14-year-old Avonte Oquendo drowned in the East River of New York City. Both of these boys were autistic.

In honor of these children who lost their lives as a consequence of their conditions, last year, Senator Charles Schumer (D-NY) introduced legislation, cosponsored by Senate Judiciary Committee Chairman Chuck Grassley (R-IA), to help families in locating missing loved ones who have autism, Alzheimer’s, and other cognitive impairments that create conditions that cause them to wander from safe spaces.

What’s not to like about this bill? Congressman Chris Smith, who co-chairs both the Congressional Autism Caucus and the Alzheimer’s Disease Task Force, had this to say about the necessity of putting precautions in place regarding wandering:

“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”

About the children who died after having wandered from safe spaces, the attorney of the Avonte family, David Perelman, says this: “The loss of these children were very dark days. It is good to see that something positive will come of it.”  The Perelman Firm has been a supporter of the bill since its introduction in 2014.

On July 14th, 2016, Senate unanimously voted in favor of “Kevin and Avonte’s Law,” but a long amendment has kept it from moving since last summer. The House now must re-vote on the bill, but has not yet done so.

Look closer. How would this bill achieve the goal of finding cognitively impaired people? By sewing GPS devices into their clothing — even, if you read the amended bill closely, against the will of individuals who do not wish to be assigned a tracking device.

Critics say this is 1984 — a slippery slope. By starting with kids and adults with cognitive impairments, they ask, does this bill normalize the use of GPS devices on citizens outside of those categories? And indeed, the categories of people who may be covered under this law, is not narrowly defined.

You can read the amendment for yourself, which sets “Standards and Best Practices for Use of Tracking Devices.” The amendment doesn’t restrict the possible use of tracking devices just to loved ones of people with cognitive impairments.  It allows the government to “determine” who should be tracked with the devices. It includes streaming the tracking data to law enforcement, and the Attorney General, and it also slips into the amendment, the note that the tracking devices might be installed “over the objections of an individual: ” Finally, it determines the role that State agencies should have in administering tracking devices:

“SEC. 302. STANDARDS AND BEST PRACTICES FOR USE OF TRACKING DEVICES.

(a) Establishment.—

(1) IN GENERAL.—Not later than 120 days after the date of enactment of this Act, the Attorney General, in consultation with the Secretary of Health and Human Services and leading research, advocacy, self-advocacy, and service organizations, shall establish standards and best practices relating to the use of tracking technology to locate individuals as described in subsection (a)(2) of section 240001 of the Violent Crime Control and Law Enforcement Act of 1994 (42 U.S.C. 14181), as added by this Act.

(2) REQUIREMENTS.—In establishing the standards and best practices required under paragraph (1), the Attorney General shall—

(A) determine—

(i) the criteria used to determine which individuals would benefit from the use of a tracking device;

(ii) who should have direct access to the tracking system; and

(iii) which types of tracking devices can be used in compliance with the standards and best practices; and

(B) establish standards and best practices the Attorney General determines are necessary to the administration of a tracking system, including procedures to—

(i) safeguard the privacy of the data used by the tracking device such that—

(I) access to the data is restricted to agencies determined necessary by the Attorney General; and

(II) use of the data is solely for the purpose of preventing injury or death;

(ii) establish criteria to determine whether use of the tracking device is the least restrictive alternative in order to prevent risk of injury or death before issuing the tracking device, including the previous consideration of less restrictive alternatives;

(iii) provide training for law enforcement agencies to recognize signs of abuse during interactions with applicants for tracking devices;

(iv) protect the civil rights and liberties of the individuals who use tracking devices, including their rights under the Fourth Amendment to the Constitution of the United States;

[…] (II) use of a tracking device over the objection of an individual; and

(vi) determine the role that State agencies should have in the administration of a tracking system.”

Is “wandering” a serious issue? Yes. According to a national survey conducted by PLOS ONE, a journal published by the Public Library of Science, one-third of children with autism have wandered away from their primary caregivers. This risk endangers kids physically, as well as inflicting emotional duress on their families.

According to the Autism Safety Coalition, over 500 individuals with autism have wandered away at some point since 2011, with each episode costing as much as $2 million per search effort. Also, according to the same organization, a 2015 study found that 27 percent of children with developmental disability are reported to have wandered away from their caregivers each year. That same year, 31 individuals with autism died after having wandered away from a safe space.

Schumer’s bill, known as “Kevin and Avonte’s Law,” named in honor of the two autistic boys, will reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program, as well as including new provisions to support people with autism.

This proposal is a continuation of “Avonte’s Law of 2015,” which allowed grants distributed within the Justice Departments to be used by law enforcement and nonprofits in order to foster training in educational programs about how law enforcement can deal with people with autism. These programs included emergency protocols for school personnel, more money for first responders, and access to a “technology program” for individuals who have wandered from safe spaces.

Under this law, $12 million will be allocated to ensure that schools and other institutions have access to training about wandering kids and adults. That is not the controversial part. The bill also offers  families and caregivers of individuals with autism and Alzheimer’s, increased accessibility to GPS tracking devices. Even that is not the most controversial part. The controversial part is that law enforcement will have access to the data from the GPS devices — and the pool of people subject to tracking, is not narrowly defined:

While some response to this bill has been positive, there has been opposition. In a Huffington Post blog, “When Regulating Tech Doesn’t Cause Uproar: Kevin And Avonte’s Law,” Daniel Etcovitch, a JD candidate at Harvard studying Law and Technology, confirms that GPS chips would be sewn into the clothes of children with autism; his view is that this a form of technological regulation. But supporters of the law say that  this  technology is not any more invasive than a cellphone GPS.