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Monday, December 12, 2016

Government to GPS-Track People with Autism and Alzheimers

A dream or perhaps a nightmare: a federal bill would provide grants to set up GPS tracking of individuals with developmental disabilities, including autism and dementia. Who is next? This is not my imagination.

Kevin and Avonte’s Law of 2016 passed on December 8, 2016 in the U.S. House of Representatives and was sent to the Senate. Likely to be re-introduced in the new year, the bill would provide grants to law enforcement and nonprofit for “ proactive programs to prevent wandering and locate missing individuals with forms of dementia, such as Alzheimer’s Disease, or developmental disabilities, such as autism, who, due to their condition, wander from safe environments.”

Lest this raise privacy concerns or a specter of A Disability Big Brother, the bill forbids the device to be “implanted” or to “create an external or internal marker.” It must be “non-invasive and non-permanent.”

 “Caregivers could simply apply for the tracking devices, and the local agencies would be responsible for monitoring them. The devices would be free to consumers, and the program would be in operation from 2017 through 2021 but once set up, Congress would have the ability to reauthorize the new federal program any time after that.”“

Supporters point to tragic deaths and abuse of people with disabilities who have “wandered”from their homes, while critics question spending millions in public funds to create a device (and bureaucracy) to track people who are not dangerous and not criminals. A Daily Caller article conveyed the essence of the debate:

While advocates of the legislation — like Texas Democrat Rep. Sheila Jackson Lee and New Jersey Republican Rep. Chris Smith — point to tragedies that could be averted by law enforcement using such technology to find those with mental disabilities who wander into dangerous circumstances, others, like Texas Republican Rep. Louie Gohmert, say the good intentions of the bill could be broadly interpreted.

“While this initiative may have noble intentions, ‘small and temporary’ programs in the name of safety and security often evolve into permanent and enlarged bureaucracies that infringe on the American people’s freedoms. That is exactly what we have here. A safety problem exists for people with Alzheimer’s, autism and other mental health issues, so the fix, we are told, is to have the Department of Justice, start a tracking program so we can use some device or method to track these individuals 24/7,” Gohmert said in his floor speech.

He later went on to say, “Sponsors of the bill tell us not to worry, because they got language in there that says the tracking device cannot be invasive, it is totally voluntary AND it is only a couple of million dollars to get it started –so it is not all that much money.”

Gohmert explained, “It is absolutely staggering that the Republican majorities in the House and Senate could be so blind to government overreach that they would allow a federal tracking program, not for criminals in the U.S., not for terrorists, not for illegal immigrants or even immigrants who commit crimes, but for people with ‘developmental disabilities’ a term that is subject to wide misinterpretation. The Senate Republican leaders even brought it to the floor with almost no one there and asked that the new Big Brother program be passed without even having a vote at all – someone just asks for ‘unanimous consent.’ Since no one is advised about the bill being brought up, no one who would object knows to be there, so it passes without anyone ever actually voting for it.”

Rep. Smith, the bill’s main sponsor, however, argued in a press release following the passage of the legislation that the bill will fill a great unmet need, particularly in the autism community—since 2011, over 100 individuals with autism lost their lives after wandering from a safe environment,” said Smith. “Time and training are of the essence when individuals wander and Kevin and Avonte’s Law can help equip local law enforcement with the training and technology to bring these children home safely.”

Wouldn’t it be wonderful if the disability community had another approach. If the choice is tragic death or a government tracking system, perhaps one might choose the latter? It turns out that parents of children with disabilities came up with a simple technological – and sophisticated – way to keep in touch with family who might lose their way. It is years old.

There is a great review of a solution by someone who calls himself, “Autism Daddy” on his blog, The author’s March 15, 2015 entry describes himself as “46 year old neurotypical dad with a 13 year old son with severe, non-verbal autism & epilepsy.”

The device is called ANGELSENSE. The devise was created by Doron Somer, dad of a 17 year old son with autism. He comes from a technology background but put his career on hold and started this company a few years ago as a solution for his son and others.

Like so many positive things, this a universal design, and can be useful in many situations outside the disability context. Here’s Autism Daddy’s description:

It's basically like a one way phone with a gps in it. You know how you can use Find My Iphone or Find My Friend to track your phone or your friends phone wherever it is.

This is doing pretty much the same thing.

You preset your home location into it, you charge it overnight and then when your kid leaves for school in the morning you put it in his pocket or in his backpack.  It attaches to the pocket or backpack with a little magnetic key.  I'm not sure how it works, but it does.  The magnet helps you take the metal cap off, you stick it in the backpack or pants pocket, you put the cap back on, and no one is getting that device out.  You can see how it attaches in this video.

And then based on how you have set it up it then emails you and texts you when your kid leaves and arrives at any given location.  When your kid arrives at a brand new location it will notify you, "In the last 30 minutes Kyle is a place you have not named.  Please name it if it is visited regularly."  And you click on the link, a map shows up of the unnamed location and you name it.

After about a week we had all Kyle's usually places named and prestored and here is how it works.

Wifey [his word, not mine. DF] leaves to take Kyle to school with the device in his pants pocket and both her & I both get texts and email alerts saying "Kyle left home at 7:53am"  When he arrives at school we both get notifications that he arrived there.  If he leaves school we get a notification.  When he arrives at speech therapy we get a notification.

Then you can click on any of the lines above and see a map of that location, or the route that was taken while in transit

It is a really smart and intuitive device and the website is extremely user friendly and smartphone friendly.

Ok, so what if there's an unexpected departure?  He's not supposed to leave school until 3pm when wifey picks him up, but we get an alert that he left school at 11:19am. 

Then you go on the site, and you go into runner mode, and you get real time updates to his location (updated every 10 seconds), and you can "call" the device and you can listen in to get a better sense of where he is.  The sound quality on the listen in feature isn't great, but it's what you would expect if you had your phone in your pocket, but it gives you a sense of location (at school, indoors, outdoors, etc).

That's basically it.  It really seems to be better and different than most of the other products on the market.  We have several friends who have devices that their kids wear around their wrist or ankle all the time.  But when their kids wander off the device doesn't automatically alert them. They have to know the kid is missing and then they call the tracking company and the tracking company calls the police.  God knows how much time passes before all that takes place. 

With Angelsense you get notified as soon as your child leaves or arrives at any location.  If there's a deviation from his normal routine, you'll be notified pretty immediately and react accordingly.

So why do I, a disability justice attorney and consultant, bring this up?  One might avoid both a lot of complex administration and cost – and the possibility of litigation about government-sponsored individual tracking or its abuse – by finding ways to support and expand private consumer-driven consumer-conceived solutions, executed with finesse and compassion.