David Nicholas & Samantha Sutherland
Faculty of Social Work, University of Calgary
This review briefly introduces technology related to Global Positioning Systems (GPS)/surveillance systems and Quick Response (QR) code identification systems, as a potential resource promoting safety. It also offers a few examples of available platforms.
In considering such technology applications to support an individual with autism and/or intellectual disability, it is crucial to:
(1) Be clear on and justify the specific purpose for this resource and its contribution (and potential risk) to the person’s well-being, and
(2) Uphold their legal and human rights (as an example, see the United Nations Convention on the Rights of Persons with Disabilities: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities ).
Outline of this Review
Following a brief case example illustrating a family’s consideration of tracking and location technologies, five sections are presented:
A. About GPS/Tracking Devices and QR Code Identification Systems
B. How These Applications May Be Helpful
C. Critical Reflection: Understanding the Drawbacks and Cautions
D. Examples of Types or Brands of Tracking Systems
E. Moving Forward: Research Needed
Case Example – Meet Dmitri and His Family:
Dmitri is a 6-year old non-speaking child with autism and intellectual disability as well as many sensory sensitivities. Of great worry to his parents, Dmitri tends to run out on his own (also referred to as “bolting” or “elopement”), particularly if he is in uncomfortable moments or intense sensory spaces (e.g., a store with bright lighting or a street with noise). His family lives in a city near the outskirts of town. The community is largely surrounded by farms, suburban communities and thick forested areas.
Dmitri’s parents and their extended family have had to search for Dmitri multiple times in the past when he has left the house or another space in the community. These were terrifying experiences, and the family is always on alert due to fear for his safety. They continually watch him, and live with ongoing anxiety that he could bolt, get lost and potentially be in danger.
They are considering a GPS tracking devise so that through technology-based monitoring, his whereabouts could be detected and he could be found. Dmitri has a medical alert bracelet with key information, but his parents are questioning if a GPS tracking device could offer greater safety and security by allowing Dmitri to be located more quickly, if needed. Also, they’re considering the possibility of Dmitri wearing a badge on his shirt with a QR code so that a first responder could scan the code to access key needed information to help Dmitri get to safety. These options offer reassurance to his family as they feel that such technology-based applications may increase the likelihood that Dmitri would be found if lost or unsafe, and he could more quickly be helped to safety.
About GPS/Tracking Devices and QR Code Identification Systems
In her recent thesis on QR code use, Dr. Taylor Beck (2021) noted that “(d)ue to the increased likelihood of wandering, elopement, communication impairment, and different physical and emotional responses to stress and unfamiliar faces, individuals with disabilities have a greater chance of being misunderstood or not adequately cared for as first responders often have limited time to take action” (p. 9). Elopement is defined as leaving an area without supervision or a caregiver’s permission or awareness.
Some people with autism and intellectual disability may be at heightened risk of getting lost or needing assistance without knowing how or from whom to seek help. Also, first responders or others may misunderstand and respond inappropriately to communication differences such as nonspeaking behaviors, highly direct communication, and/or nonverbal responses. It is increasingly documented that some first responders lack sufficient education to most effectively support individuals with developmental disabilities – which may increase the risk of an inappropriate response or delayed action to a specific need or emergency. Autistic adults have identified three main themes from their experiences with law enforcement personnel: distress, trauma, and fear (Salerno & Schuller, 2019).
The impact of these various challenges is that individuals with autism and/or intellectual disability are at heightened risk for insufficient support in emergency situations. Kiely and colleagues (2016) found that protective physical barriers (e.g., fences, gates, alarms, locks) for elopement prevention are used more commonly than are technology-based tracking devices. It was also reported that elopement is most common in public places where it is often not possible to put up physical barriers (Kiely et al., 2016). The literature notes that in emergencies, some individuals with various disabilities such as intellectual disability and autism as well as those with dementia, could benefit from additional supports that promote their safety (Beck, 2021).
Advanced technology can increase the likelihood that key information is accessible to nurture safety. A GPS or a QR code identification system that is affixed to the person (e.g., a lanyard, badge, etc.) can convey information that is controlled by a trusted caregiver. This key information can inform first responders. Information provided through a QR code can include health information (e.g., diagnosis, medication, blood type, medical history, allergies), challenges with communication, emergency contacts, and other necessary information. This information can assist first responders or others to address urgent needs in a timely way and promote safety (Beck, 2021).
Along with these important potential benefits, it is important to note that studies examining GPS device use have been conducted with individuals with dementia more than with autistic individuals or individuals with intellectual disability (Hayward et al, 2016). Further, QR code identification systems haven’t yet received a lot of evaluation or research scrutiny in terms of their application in the autistic and intellectual disability communities.
GPS tracking devices and/or a QR code identification system have the potential to promote safety. This may offer caregivers greater peace-of-mind and opportunity to engage in community activities (Beck, 2021). Safety is promoted because an individual’s location can be tracked, and needed information is accessible. This can increase the likelihood that, if needed, required assistance can get to the individual as quickly as possible. But because there has been limited evaluation in studies, caution is needed as further discussed in Section C.
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How These Applications May Be Helpful
Most studies exploring the functionality of GPS/surveillance devices to locate individuals have focused on the elderly, particularly those with dementia (Hayward et al., 2016), with potential applicability for some individuals with autism and/or intellectual disability. The main reasons for using GPS technology and/or a QR code are monitoring and support for safety.
In cases of elopement and in instances in which the individual is out of a family member or caregiver’s line-of-sight, a GPS tracking device can be used to locate them and increase the likelihood of their safety. Companies (as described below) provide miniaturized devices which can be discreetly carried via methods such as attaching it to an arm band, undershirt, watch, belt, lanyard, bag, backpack, etc. These devices allow the caregiver to detect the location of the individual using an App, and depending on the company used, the caregiver can engage in a two-way conversation with the individual. Such features are noted to potentially offer greater safety and quality of life through less restricted but safe movement in one’s community.
The use of QR codes allows anyone with a smartphone to scan the code worn by the individual (e.g., a badge). Scanning the QR code could immediately access key information to assist that individual. This might include support for finding the way home, connecting with a caregiver, and/or addressing a health emergency in a way that is tailored to the needs of the individual (Rule, 2013).
Although QR codes for this purpose haven’t yet received a lot of research scrutiny, such a resource is proposed to be potentially useful especially for minimally or non-speaking individuals. Whether this be during an elopement event or a response to an individual’s emergency needs by a first responder, Beck (2021) comments on the potential merits of QR codes in more rapidly accessing personalized support from first responders and potentially easing a caregiver’s anxiety by knowing that safety is being promoted in this way.
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Critical Reflection: Understanding the Drawbacks and Cautions
Despite potential benefits, the following concerns have been raised about these resources. These concerns invite careful consideration.
- Personal information could be accessed by someone with ill intent (e.g., from a QR code) and misused in a harmful way. Caution is needed in what information is shared and use of this technology application.
- Technology may malfunction. Due to human or technological error, GPS surveillance could fail to function as intended.
- A caregiver could forget to charge the GPS device, one’s phone may run out of battery, or an internet connection may not be available, so the app could potentially be inoperable.
- A sense of false security could be assumed. Hayward and colleagues (2016) note that these devices, “may deflect the attention of staff or carers out of convenience and/or a too-easily accepted peace-of-mind” (p.72).
- Ethical issues related to QR codes or GPS tracking reflect concerns about an invasion of privacy. Accordingly, some have expressed concern that instead of giving more autonomy to an individual with autism and/or intellectual disability (as hoped for), this technology application could reduce autonomy and privacy by constant supervision or surveillance. Brisebois (2019) states, “[the] autonomy rights of an individual with a mental or physical disability should not be treated as less significant than someone who does not have a disability” (p. 520). As noted above, upholding an individual’s legal and human rights is of utmost importance.
- A visible QR code could lead to stigmatization or “outing” someone in terms of sharing personal information. This may be less of an issue for a discreet GPS device, but a QR code likely would be obvious to others.
Carefully reflecting on these considerations and cautions, and upholding the individual’s rights and well-being are critically important!
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Examples of Types or Brands of Tracking Systems
There are various types of GPS devices available. Most existing brands require the use of an app, so a smartphone is likely needed. Below are a few examples:
AngelSense ( https://www.angelsense.com/ ) is an example and at the time of writing (Spring, 2023), seems to be one of the more widely used technologies for this purpose. It offers a listening feature, one-way and two-way voice communication, multiple tamper-proof design options, unlimited guardians, geofences where you can designate “safe” areas and receive an alert if the individual leaves these areas, detailed time history for each day, and live customer service.
Apple offers the wearable Apple Watch (https://www.apple.com/ca/watch/) that may be used to track individuals. Apple Watches use GPS and can be tracked by a caregiver’s iPhone via Family Setup. These watches also provide other potentially useful features, such as biometric data (heart rate monitoring, sleep tracking, etc.). Some have suggested using Apple Air Tags to track individuals, but Apple itself recommends that this practice be avoided (for more details, see: https://support.apple.com/en-ca/HT212227).
Jiobit (https://www.jiobit.com/) offers a smart tag that can be attached to items or clothing, and enables real-time tracking. Additionally, geofences can be made and alerts sent to a caregiver’s phone when the individual leaves a “safe” location. The device also allows the wearer to press a button and alert their caregiver that assistance is required. It also has a longer-lasting battery than some other options, claiming 10 days of charge.
QR Code Identification Systems
Using QR Code Identification technology, crucial information can be made available by scanning the QR code on the individual’s person (e.g., on a badge, wrist ban or lanyard). However, Beck (2021) notes that education is needed to guide first responders on how to use the QR code, i.e., to look for and scan the QR code.
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Moving Forward: Research Needed
There has been increasing discussion about technology applications such as GPS and QR codes to identify an individual’s whereabouts, and provide key information to support them in an emergency. These technology-based applications may help caregivers, supporters and/or first responders more quickly or more effectively find and assist the individual who may be at-risk or in an emergency situation. This may be particularly beneficial for non-or minimally-speaking individuals with intellectual disability who may be unable to ask for help when needed; for instance, after elopement or in an emergency (Beck, 2021).
Researchers such as Hayward and colleagues (2016) note that only a few studies have yet investigated the practicalities of using this technology with individuals with autism and intellectual disabilities. Literature is emerging, but more research is needed for considering and potentially implementing these technology applications.
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Beck, Taylor. (2021). Integrating a QR Code Identification System for First Responders and Families Within Special Needs Communities (DNP Scholarly Project, East Carolina University). Retrieved from the Scholarship. (http://hdl.handle.net/10342/8970.)
Brisebois, J. (2019). Discrimination Legitimized by Tragedy: The Use OF GPS Tracking Devices for Individuals with Autism - A Protective Safety Measure or Unlawful Invasion of Privacy? Journal of High Technology Law, vol. 19, no. 2, 2019, p. 509-533.
Hayward, B. A., Ransley, F., & Memery, R. (2016). GPS Devices for Elopement of People With Autism and Other Developmental Disabilities: A Review of the Published Literature. Journal of Policy and Practice in Intellectual Disabilities, 13(1), 69–74. https://doi.org/10.1111/jppi.12148
Kiely, B., Migdal, T. R., Vettam, S., & Adesman, A. (2016). Prevalence and correlates of elopement in a nationally representative sample of children with developmental disabilities in the United States. PloS One, 11(2), e0148337. https://doi.org/10.1371/journal.pone.014833
Perry, J., Beyer, S., & Holm, S. (2009). Assistive technology, telecare and people with intellectual disabilities: ethical considerations. Journal of medical ethics, 35(2), 81–86. https://doi.org/10.1371/journal.pone.0148337
Rule, H. (2013, Dec 16). Identity bracelets use QR codes. McClatchy - Tribune Business News Retrieved from https://ezproxy.lib.ucalgary.ca/login?url=https://www.proquest.com/wire-feeds/identity-bracelets-use-qr-codes/docview/1468424981/se-2
Salerno, A. C., & Schuller, R. A. (2019). A mixed-methods study of police experiences of adults with autism spectrum disorder in Canada. International Journal of Law and Psychiatry, 64, 18–25. https://doi.org/10.1016/j.ijlp.2019.01.002