DISCRIMINATION LEGITIMIZED BY TRAGEDY: THE USE OF GPS TRACKING DEVICES FOR INDIVIDUALS WITH AUTISM- A PROTECTIVE SAFETY MEASURE OR UNLAWFUL INVASION OF PRIVACY?

• Author: Brisebois, Jocelyn

1. Introduction

   Approximately 1 in 110 individuals in the United States are diagnosed with Autism each year. (2) Autism includes significant emotional, behavioral, and academic challenges. (3) For instance, elopement, a challenging behavior in which an individual wanders away from safety or bolts from supervision, effects nearly 50% of individuals with Autism. (4) Elopement most often occurs when a person is seeking out an item, for example a toy, or when a person is trying to escape a task, for example doing homework. (5) It is very important for caretakers, parents, and guardians to be aware of elopement behavior so they can create preventative and responsive plans if the behavior takes place. (6)

   As society becomes more aware of the frightening consequences of elopement, parents and educators are advocating for greater protection of their children, including their adult children. (7) GPS tracking is the most recent technology that seeks to improve the response time for when an individual elopes. (8) Although recent legislation and GPS tracking companies typically discuss the positive impact that GPS tracking will have on children with Autism, few discuss the implications that GPS tracking has on adults with Autism. (9) Disability advocates are beginning to push for a greater recognition of the civil rights of individuals with disabilities, yet the creation of technologies continues to push this goal even further out of reach. (10)

   This paper examines how AngelSense, a GPS tracking device typically used for children with Autism, creates far-reaching issues for adults with Autism.

2. Background

   1. Elopement

      One potential behavior that an individual with Autism may exhibit is to leave, or flee from, supervision and safe areas. (11) Elopement is the term associated with wandering or bolting away from a secure area. (12) Elopement typically serves a specific purpose for the individual who is wandering. (13) The purpose of elopement may be goal-directed, a method of task-avoidance, or an escape mechanism due to fear and anxiety. (14) When an individual with Autism wanders, the stark reality that many parents and guardians fear, includes serious bodily harm or death. (15)

      The National Autism Association reported that between 2009 and 2016, 158 individuals with Autism died after eloping. (16) The report provided that of the 808 individuals with Autism that went missing during that time span, 17% resulted in death, 13% required medical attention, and 38% had a heightened risk of bodily harm. (17) Accidental drownings accounted for 71% of elopement deaths and 18% of those deaths were caused by traffic injuries. (18) Moreover, approximately one third of children with Autism who wander cannot communicate their name, address, or phone number. (19)

      However, a 2009 study provided insight into the development of elopement prevention. (20) The research focused on the functionality of elopement, and what types of interventions could specifically address the operative aspect of the behavior. (21) Moreover, the article calls upon parents and caregivers to create elopement intervention treatment plans for home. (22)

      In 2016, elopement received national attention through the Senate's passing of Kevin and Avonte's Law. (23) The legislation was created in honor of Kevin Curtis Willis, a 9-year-old with Autism, who drowned in a river after wandering away from home, and Avonte Oquendo, a 14-year-old with Autism, who drowned after wandering away from school. (24) Kevin and Avonte's Law intends to protect children with disabilities who tend to elope, by providing grants to help train law enforcement agencies and school personnel on emergency protocol. (25) At the bills passing, Senator Chuck Grassley stated,

      The feeling of dread and helplessness families must feel when a loved one with Alzheimer's or autism goes missing is unimaginable. But with the Senate's approval of Kevin and Avonte's Law, we are one important step closer to increasing the chances of a positive ending to many of these nightmares. This bipartisan bill applies proven community alert systems to help locate people with Alzheimer's, dementia, autism, and related disorders who may be susceptible to wandering away from safety. It also supports training for first responders and other community officials to better prevent and respond to cases. By preventing similar tragedies in the future, we can honor the lives of Kevin, Avonte, and others who lost their lives because a medical condition caused them to wander from safety. That's exactly what this bill aims to do. (26) The law also provides funding for non-invasive tracking technology. (27) However, the passage of Kevin and Avonte's Law has sparked debate about what types of technology should be used to track individuals with Autism. (28)

   2. Decision-Making

      All people, including individuals with disabilities, have the right to make certain decisions about his or her own life. (29) Courts have acknowledged that individuals with disabilities are often deprived of their right to autonomy. (30) When making decisions that eradicate an individual's ability to make decisions regarding their life, liberty, and property, the Constitution guarantees them the right to notice, access, and meaningful opportunity to be heard. (31) Moreover, the Americans with Disabilities Act of 1990 ("ADA") requires that states provide people with disabilities, "equality of opportunity, full participation, independent living, and economic self-sufficiency." (32) Further, the International Covenant on Civil and Political Rights ("ICCPR") provides that all individuals have the following entitlements: (1) the right of self-determination; (2) the liberty of movement including the right to choose a residence, freedom from unlawful interference with privacy; and freedom of association with others; and (3) requirement of periodic review to ensure the rights are properly recognized. (33)

      The loss of autonomy becomes especially egregious when the individual reaches the age of 18. (34) When an individual with Autism attains the age of majority, they are legally entitled to make their own decisions. (35) However, through a process called guardianship, the fundamental right is taken away from the individual with Autism, and given to the individual's parents or another court-appointed adult. (36) While this type of supervision is warranted in particular cases, guardianship is often assigned in cases in which the adult has the capacity to make his or her own decisions. (37) Further, guardianship also creates the opportunity for guardians to abuse their power by making decisions for the individual with Autism that are not truly in that individuals best interests. (38)

      Courts have recognized that appointing guardians for people with developmental disabilities directly infringes on their fundamental right of liberty. (39) Under the Fourteenth Amendment, the Disability Convention, and the ICCPR, courts are required to monitor guardianship relationships. (40) As more people grasp the extent that guardianship infringes on the rights of individuals with disabilities, adaptive guardianship and other less intrusive options are beginning to be explored. (41) Guardian relationships should not be treated as an all or nothing affair, and parents and courts should ensure that the individual is making as many independent decisions as possible. (42) In addition, over the past few years, advocacy groups have made a push for society to recognize that individuals with Autism should be able to exercise their right to make their own decisions. (43)

      One way in which advocates are beginning to make a stronger push for programs for adults with disabilities to have greater control over their lives, is through a system called supported decision making. (44) Supported decision making allows individuals with disabilities to be a part of a team to help with decision making. (45) Unlike guardianship, supported decision making ensures individuals with disabilities to engage in a process that almost every adult doesreaching out to family, friends, and colleagues when making life decisions. (46) While individuals with disabilities may need assistance or advice when weighing decisions, they do not necessarily need someone to make the decisions for them. (47)

      A UN pilot project recognizes that individuals with disabilities may need support to make appropriate decisions, but not to the extent that guardianship provides for. (48) In the U.S., the Supreme Court of oklahoma has acknowledged that mental illness and involuntary commitment are not sufficient to conclude that an individual is incompetent to make their own decisions. (49) Moreover, 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. (50)

      Supported decision making has been a major topic of discussion for individuals with disabilities in countries outside of the United States for more than a decade. (51) For example, in 2006, the United Nations signed the Convention on the Rights of People with Disabilities, the first international treaty to specifically address the human rights of individuals with disabilities. (52) A key component of the treaty is that there is a need to "ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances." (53)

      In addition, recent studies have acknowledged how important autonomy is for individuals with disabilities, especially for adult who live in a group residential setting. (54) Although individuals with disabilities have the right to make their own decisions about where to live, fewer than half of adults with intellectual disabilities in the United States are given the opportunity to have any say in where they are living...