Safety versus autonomy: advocates for autistic children split over tracking devices

This month, Congress came very close to passing “Kevin and Avonte’s Law,” legislation that would have made available federal funding for tracking devices to help local agencies monitor the movements of children with developmental disabilities. Named after two autistic children who died after wandering away from supervised environments, the bill was a high priority of a number of parent advocacy groups – and a source of deep concern to other groups, including the self-advocate community of people with disabilities.

A version of Kevin and Avonte’s Law passed the Senate in July, incorporating carefully crafted language developed by the bill’s primary sponsor, Senator Chuck Schumer (D-NY), designed to address or at least mitigate concerns from self-advocates. The Senate language restricted the acceptable scope of tracking device use to cases that would reduce the risk of injury or death to the person tracked. It also provided funding for safety issues other than tracking devices, like training first responders and educators on the needs of people with disabilities, and training law enforcement to help them spot signs of abuse.

Unfortunately, when the House passed the legislation on December 8, several modifications were made, including allowing the use of tracking devices for purposes other than locating missing persons — tracking people to prevent them from harming others, for instance. The House also wanted to pay for the program by defunding an important community-policing grants program not directly related to disability. This caused my organization, the Autistic Self Advocacy Network, previously neutral on the legislation, to switch to active opposition — and also inspired several other major disability groups to pull their support.

Competing call-in campaigns to the Senate ensued through late last Friday, with proponents calling for a floor vote before the Senate adjourned for the session and critics urged Senator Schumer to reject the House changes. In the end, no vote on the bill took place, so proponents must start the process again in the new Congress.

For many who had been willing to endorse the legislation or at least remain quietly neutral when tracking devices were explicitly limited to locating missing children, the addition of language that allowed tracking for other purposes was a bridge too far. People with developmental disabilities are often unfairly perceived as dangerous to their communities, even if they have no history of violent behavior. Allowing tracking devices — which can include locking bracelets and anklets — to be applied for purposes other than locating missing persons seemed to many critics to open up the floodgates for their use in ways that would inappropriately limit the autonomy of disabled Americans.

Over the last decade, a growing split has emerged in the autism world. Some families argue passionately that safety concerns justify applying far more restrictive measures to their children than are common in other disability groups. On the other hand, people with disabilities themselves, and other groups of family members, tend to be more concerned that such an approach will lead to greater isolation and risk for abuse. They don’t dismiss the safety concerns, but they prefer to see other tools used to address them.

The disputes now playing out over “wandering” behaviors aren’t new: In 2011, disability rights organizations clashed with autism parent groups over a proposal to establish wandering as an official diagnosis in the major coding system used by medical providers in the United States. Despite the opposition, the coding was eventually incorporated.

That debate followed the same parameters as this one, with proponents expressing concern about safety and opponents worrying about the potential for abuse and loss of autonomy. The challenge is that autistic people and others with disabilities “wander” for all sorts of reasons. Some of this wandering can be dangerous, especially for children. But an overly medical approach to wandering risks placing inappropriate limits on the ability of disabled adolescents and adults to explore the broader community, potentially contributing to harmful isolation.

This week, the Centers for Medicare and Medicaid Services issued guidance to state policymakers and service-providers on how best to deal with wandering and “elopement.” In it, federal policymakers described the the dilemma well:

Wandering occurs in ways that may appear aimless but often have purpose. People may wander simply because they want to move. Sometimes wandering responds to an unmet basic need like human contact, hunger, or thirst; a noisy or confusing environment; or because people are experiencing some type of distress, like pain or the need to use the toilet. Wandering can be helpful or dangerous, depending on the situation. Although people who wander may gain social contact, exercise, and stimulation, they can also become lost or exhausted.

Proponents of tracking devices often point to a study from 2012 indicating that almost half of all autistic children engage in some form of wandering and elopement behavior.

Interestingly, the same study asked families as to the reasons why their child eloped. The most commonly cited included “simply enjoys running and/or exploring” (53 percent), “tries to reach a place he or she enjoys” (36 percent), “tries to escape an anxious situation” (34 percent), “tries to escape uncomfortable sensory stimuli” (30 percent), and “pursues his or her special topic” (30 percent). In describing their child’s mental state when wandering off, the top five parental responses were “focused, with intent to go somewhere or do something” (50 percent), “content or happy” (37 percent), “playful” (30 percent), “exhilarated” (27 percent), and “anxious” (17 percent).

While parents were offered “seems to elope completely at random” as a choice, it failed to make the top five. This suggests what autistic adults have been saying for some time – that wandering is typically a purposeful response to an autistic child’s environment, not a discrete medical symptom. To borrow from Tolkien, “Not all those who wander are lost.”

To be sure, some are lost. Yet there is no data showing that trackers are effective at preventing injury or death for people who wander. People who have poor traffic safety skills or who can’t swim can easily die within minutes after they go missing, long before a device could be activated.

Viewing wandering as a purposeful behavior suggests that safety concerns may be better addressed by offering additional support to families, so that children can develop skills that enable them to more easily access the broader community – or support that periodically relieves parents of sole responsibility for supervision.

It is also important to invest in communication supports so that autistic children can make their needs known more easily, as well as to provide additional training on safety skills. These might include accessible swimming lessons, or how to navigate a community on public transportation.

To view wandering as a medical symptom makes it less likely that service-providers will work to understand the intent behind it — or that law enforcement will look for signs of abuse prior to returning a person to the home they endeavored to “elope” from.

We know that children and adults with developmental disabilities face many very real safety concerns – but one of them is physical and sexual abuse from family members and service-providers. These concerns deserve the same scrutiny and concerted response as parental concerns about traffic injuries or drowning during wandering episodes.

It is in some ways ironic that Congress would take up this legislation at a time when proposals to dramatically slash Medicaid funding are putting at risk the support services and training that provide a practical solution to some of these problems. Medicaid funding is the primary financing mechanism for disability support services, including the funding of support staff that can help children and adults with significant behavioral challenges avoid danger while navigating their communities. In some states, Medicaid has paid for remote monitoring technology distinct from tracking devices – including sensors that detect if a door has been opened during the night (and wake a family member).

There’s also a question of priorities. Should autism advocates be investing so much time in trying to establish a $2 million grant program, when hundreds of billions of dollars in Medicaid funding may be at risk?

Furthermore, the last-minute House modification to pay for tracking devices by defunding the Byrne Criminal Justice Innovation Program, which supports collaborative efforts between low-income neighborhood leaders and law enforcement to address crime hot spots, is particularly wrongheaded. It seems ill-advised to take money from one marginalized community in order to support another. But these community-policing grants also stand to benefit people with disabilities, including people of color and those from low-income backgrounds. Research shows that people with disabilities are disproportionately likely to be victims of police brutality and shootings.

The Autistic Self Advocacy Network maintained neutrality on this legislation till the last-minute changes in the House. In the new Congress, we and other disability rights groups will be closely scrutinizing the language used upon re-introduction.

If the original Senate language limiting the scope of tracking device use is restored, the bill may have a window to move forward. If not, it’s likely that this will be one more area in which conflicting priorities among different groups advocating for autistic citizens mean a lack of progress. In managing the careful balance between parental fears about safety and self-advocates’ concerns about abuse and loss of autonomy, even the slightest tweak in legislative language can tip the scales.

Ari Ne’eman is the president and co-founder of the Autism Self-Advocacy Network, and a former member of the National Council on Disability. Follow him on Twitter: @aneeman