The new mental health hotline number “988” will roll out across America in July of 2022, pushed by hundreds of millions of dollars in federal funding alongside another $2 billion for related mental health services.

Last year, the Substance Abuse and Mental Health Services Administration (SAMHSA) awarded control of 988 to Vibrant Emotional Health, the New York-based nonprofit that operates the National Suicide Prevention Lifeline (NSPL). That decision has been protested by some, though, because Vibrant demands that its 180 participating call centers implement a controversial policy of covertly tracing many calls. Furthermore, Vibrant has made clear its desire to prevent all other, non-NSPL crisis lines from receiving any 988 calls or related state funding—endangering the survival of any community-based crisis hotlines that are truly confidential.

It took nearly two years of denied interview requests and stalled freedom of information access efforts to wrest data from SAMHSA showing that Lifeline’s covert call-tracing practices affect tens of thousands of callers every year. In November of 2020, Mad in America reported on people who’d had life-upending and often traumatizing experiences when Lifeline conversations they’d been assured were “anonymous and confidential” in fact resulted in them getting visited by police at their homes, schools, or workplaces, and detained against their will in psychiatric hospitals. At the time of their calls, none were intending to or in the process of killing themselves; all were baffled by why they’d been targeted for forced interventions. And indeed, the Lifeline’s “Imminent Risk” and “Active Rescue” policies and training show that calls may be traced for a wide variety of vaguely defined rationales intended to “help” people.

But after another year of freedom of information appeals processes, internal NSPL meeting minutes newly obtained by Mad in America, along with recent federal reports, are still more controversially revealing: As the 2020 Mad in America article was in development, the NSPL began holding internal discussions about call tracing. During these meetings, members of the NSPL’s own Lived Experience Committee passionately criticized the call-tracing policies and practices—leveling many of the same criticisms that would get raised in the article. In response, Vibrant Emotional Health and NSPL leaders promised changes to reduce call tracing.

However, shortly after those meetings, Vibrant/NSPL leaders began lobbying government for direct control over vastly expanded electronic surveillance and geolocation tracking powers—broader powers than even police routinely wield. If implemented, the result will be an unprecedented invasion of Americans’ privacy—the automatic exposure of the personal information and precise physical location of literally everyone who calls, texts, or chats through 988.

People with Lived Experience Speak Up

The NSPL has a “Steering Committee” of senior leaders, a “Standards, Training and Practices Committee” (STPC) comprised mostly of mental health professionals alongside NSPL senior leaders, and a “Lived Experience Committee” (LEC) of suicide attempt survivors, hotline users, and family members. According to the NSPL website, the STPC sets expert standards of practice. The main role of the LEC is to help promote the Lifeline. The tensions inherent in this division of responsibilities and marginalization of those with lived experience came to the fore during the discussions about call tracing.

In August 2020, four LEC members were invited to participate in a special STPC meeting about call tracing. According to the minutes, these LEC members acknowledged the noble “goal” of the NSPL’s so-called “Active Rescue” policy. However, the LEC representatives called “Active Rescue” a “euphemism” for what was usually going on—aggressive police interventions followed by forced psychiatric detentions. “While ‘rescue’ and keeping a person ‘safe’ may be the intent,” the LEC representatives said, “the actual result” is often “risks to the individual,” “unintended harms,” and “trauma.”

The LEC representatives pointed out that sending police “into the homes of black and brown individuals in mental health crisis” created especially serious “dangers of brutalization, violence, and criminalization.” Similarly, the minutes stated, transgender individuals frequently found law-enforcement encounters to be so “traumatizing and victimizing” that “trans individuals would not seek help from a hotline service where they could feel threatened by a potential police encounter.”

Indeed, the LEC members argued, when people learn about these NSPL practices, the mere possibility of such call tracing “can deter people from getting Lifeline help.”

In addition, they said, the unwanted interventions can foist large medical bills and “financial hardships” on impoverished people whom the free counseling line is intended to serve.

The LEC members further expressed concerns about how the NSPL has even been subjecting young children to these surprise police interventions and psychiatric detentions. Such actions, they said, could well “aggravate pre-existing family conflicts” to potentially destructive effect.

And the call tracing is being implemented too frequently and unnecessarily, the LEC members argued. An example was brought up of a Houston crisis center that stopped using the euphemism “Active Rescue,” and instead named the call-tracing practice for what it was: “Sending Law Enforcement.” This, coupled with educating call-responders about the risks of tracing people’s calls, led to an immediate 65 percent drop in the number of times police were sent out. The LEC members argued that all NSPL staff and volunteers should therefore be more vigorously “educated about the potential harms that could occur” from call tracing, especially “for certain populations that have been historically marginalized and/or victimized by law enforcement and mental health systems, including LGBTQ and BIPOC communities.”

The LEC members recommended “removing police involvement entirely” from the NSPL’s practices.

A Call for Greater Diversity

At the ensuing October 2020 meeting of the entire Lived Experience Committee, NSPL leaders gave a summary of that August discussion—and protest erupted. LEC members who’d been at the August STPC meeting objected that the summary had “left out” significant concerns raised about the dangers of call tracing.

The NSPL leaders assured everyone that the final meeting minutes would reflect all of the concerns, and the meeting eventually proceeded. The LEC membership as a whole then reiterated many of the same criticisms of call tracing, and reaffirmed that the NSPL must start “moving away from euphemisms” such as “Imminent Risk” and “Active Rescue.”

Some LEC members themselves had been subjected to unwanted police interventions during mental health crises, and the minutes noted their “profoundly moving” stories of the harms they’d suffered.

There was a call for “greater membership diversity” at the NSPL, so that the organization “reflects the voices of the people we intend to serve.” The LEC members also urged training NSPL staff and volunteers to provide callers with more “honesty” and “transparency” about the call-tracing practices, and to enact greater “empathy” and “collaboration.”

The professional leadership of the NSPL then summarized and closed what had apparently been a heated meeting with the LEC. The minutes recounted: “We have heard the sound of trauma. But it’s not just the sound of trauma, it’s also the sound of expertise, and members have made policy recommendations based on that insight. An LEC member noted that we don’t want to abandon these decisions and this work just because we’re hurting; we work while hurting all the time. We are going to continue to have difficult discussions.”

Promises of Change

At the following December 2020 meeting of the NSPL’s Standards, Training and Practices Committee, the STPC promised changes.

The STPC pledged to “provide training/education to crisis center staff on the impact of dispatching emergency services.” This training would emphasize the “potential physical dangers,” trauma, criminalization, stigmatization, and possible financial consequences of call tracing, especially “on persons from historically victimized/oppressed communities.” And the STPC vowed to include “individuals from impacted communities with lived experience” in developing the training.

The STPC further promised to start more closely tracking the uses of call tracing by NSPL call centers to determine “if involuntary activation of emergency services was the most appropriate response.”

In a foreboding sign of what was to come, though, the STPC backed away from increased transparency. LEC members wanted to purge NSPL policies, training, and communications of the misleading euphemism “Active Rescue,” and suggested the matter-of-fact, “Sending Law Enforcement.” However, the STPC did not even include this as an option for consideration, and instead floated other euphemisms like “Non-collaborative Emergency Intervention.”

Then, just several months later, Vibrant Emotional Health and NSPL leaders went to lobby the Federal Communications Commission and federal government—and all of the concerns the LEC members had raised about the NSPL’s call-tracing practices had seemingly evaporated.

The FCC Considers Call Tracing

Calls are currently routed to the geographically closest NSPL call centers based on callers’ area codes. To get a call traced, NSPL call-responders must contact a 911 dispatch center to do it. But Vibrant Emotional Health and NSPL leaders have begun lobbying the Federal Communications Commission (FCC) and federal government for direct control over cutting-edge call-tracing technologies. In April of 2021, the FCC issued a 21-page report on discussions exploring the possibility of incorporating mass surveillance and geolocation tracking into 988 functionality, and in November a report and order on texting to 988.

the FCC seal

Both reports are instructive for their descriptions of how such tracing works. Currently, calling 911 activates a special “emergency mode” in any mobile device. Called “Enhanced-911” or E911 functionality, the device immediately, automatically gathers and transmits a slew of personal and geolocation information that’s then made available to emergency responders. Since 2015, the FCC has been gradually implementing “NG911,” or Next Generation 911—requiring mobile service providers to adopt the latest, most advanced technologies for geolocation accuracy. NG911 functionality—which, like E911, is being built into all mobile devices and cannot be shut down by device owners—will identify a device’s location anywhere to within three meters on three-dimensional x, y, z coordinates, including, for example, exactly where a person is located within an apartment building.

Although the intention was to help people who call 911, some police in the US and Canada have started using the tracking technology for real-time surveillance without getting warrants, which has become the subject of court challenges. Others have expressed worries about malicious actors accessing the tool. But until now, no one has suggested throwing open NG911 in unregulated fashion for uses by other people and organizations for entirely different purposes besides 911 emergency response—such as surveilling, tracking, and incarcerating people who are struggling with emotional distress.

For or Against Mass Surveillance

Since about 20 percent of mobile devices now employ area codes that don’t actually correspond to where the device owner lives or works, Vibrant/NSPL leaders argued to the FCC that they should be able to automatically route all online and phone contacts to the nearest NSPL call center based on that person’s current geolocation. This would help NSPL call-responders give callers relevant local referrals to resources and services.

Furthermore, Vibrant/NSPL leaders argued, rather than having to contact a 911 dispatch center to initiate a trace, all NSPL call centers should themselves be able to directly access every caller’s personal information and precise current geolocation. This would, they suggested, enable speedier emergency responses.

Basically, Vibrant/NSPL argued that everyone who calls, texts, or chats through the new 988 number should have their personal information and exact current geolocation to within three meters exposed to NSPL call centers automatically, immediately, and by default.

Meanwhile, Vibrant/NSPL submissions didn’t mention to the FCC any of the concerns about call tracing that their own Lived Experience Committee had raised about inappropriate uses, emotional betrayal, upended lives, and forced psychiatric hospitalizations. And despite the fact that Vibrant/NSPL leaders know that many people whose calls get traced are not in any actual immediate physical danger, they told the FCC repeatedly that call tracing “only” occurs “in rare but urgent circumstances” when “without intervention the individual is likely to sustain a life-threatening injury” and it’s “required to save a caller’s life.” These misleading descriptions of call tracing as always “life-saving” were supported in submissions from other mainstream mental health organizations, including the National Alliance on Mental Illness, American Foundation for Suicide Prevention, and Mental Health America.

Perhaps not surprisingly, the FCC then wrote in its own report, “[W]e conclude that transmitting geolocation information, including dispatchable location information, with 988 calls would have significant benefits.” And the FCC surmised it might have the legal authority to grant these powers, since privacy law already allows such tracking to be used for life-saving “emergency services.”

However, the FCC wasn’t entirely duped. Its report noted that “some commenters” had pointed out that, “In contrast to 911 callers, who are usually seeking an immediate, location-specific medical or police response, callers to the Lifeline may not want to reveal their physical location.” The FCC noted that revealing all 988 callers’ names and locations “could undermine the benefits of the Lifeline by dissuading at-risk and vulnerable populations from using the service in a time of need, out of fear of embarrassment, aversion to intervention by authorities, or other similar reasons.”

So the FCC recommended to Congress and the Senate that a national “multi-stakeholder advisory committee” be formed to examine the “important legal issues for consideration, including those surrounding the privacy of caller information,” as well as “concerns regarding technical complexity and potential costs” that telecommunications providers had raised.

Such a committee has so far not been formally announced. Instead, in passing the Suicide Prevention Lifeline Improvement Act of 2021 last May, Congress recommended that the Government Accountability Office examine the 988 geolocation issue further. The Senate currently seems close to doing the same.

But in reading the FCC reports, I was struck by the apparent lack of comments from organizations with expertise in electronic surveillance and privacy issues. Much like Vibrant/NSPL had essentially ignored its own Lived Experience Committee, had Vibrant/NSPL and all of these mainstream mental health organizations avoided even soliciting the perspectives of experts on the core privacy issues under discussion?

The ACLU Weighs In

Susan Mizner, an attorney and director of the American Civil Liberties Union (ACLU) Disability Rights Program, described it as a “huge” and “worrisome” possibility that 988 could come with precise geolocation tracking.

In a call, Mizner apologized for how long it took to respond to my request for an interview—The ACLU hadn’t been aware that the FCC was holding discussions on 988 call tracing. Mizner said that fully considering the issues required bringing ACLU disability experts together with those working in privacy and electronic surveillance. During that cross-sector discussion, Mizner said all sides agreed that geolocating callers to the Lifeline could be beneficial—but only up to a point. It would be better and technologically feasible, explained Mizner, to connect callers with their nearest call center by geolocating them based on the general area they were calling from while disclosing no other personal information. The FCC report indeed implied that cities, zip codes, or other less-invasive locating of callers would be possible.

“We absolutely support routing the calls to the correct call center,” said Mizner. “But routing the call doesn’t require geolocation to three meters.”

The ACLU also has concerns about tracking callers’ locations in order to send out police. “If someone has reached out to 988, that means that they’re open to help, and they’re asking for help,” said Mizner. “We don’t believe that help should come in the form of someone who carries a gun.” Sending out police “against the will of the person who has called,” she noted, “can lead to an escalation of the problem rather than solution.”

“More discussions with the community, especially with people who have lived experience, are critical before geolocation should be part of a 988 system.” The ACLU, Mizner said, had contacted the FCC. “They seem very open to having larger discussions on this.”

The ACLU also hopes that new federal funding for mobile mental health crisis teams will result in more social service and peer support workers responding in such situations than police. Vibrant/NSPL and other mental health organizations made a related argument to the FCC—saying that, if NSPL staff have more direct control over call tracing and dispatch decisions, this could be a step towards reducing dangerous police interventions.

However, while mobile mental health crisis teams could plausibly reduce shootings, evidence suggests they wouldn’t reduce forced hospitalizations very much. For example, a 2021 study in New York City found that 86 percent of calls to 911 for welfare checks resulted in police taking people to hospitals. In an attempt to solve this problem, mobile crisis teams comprised of mental health professionals were specially trained in de-escalation and community referrals and sent only into situations where there was determined to be no risk of harm of any kind. Yet the mental health professionals still psychiatrically hospitalized nearly half of those to whom they responded.

Notably, if those numbers are similar nationally, based on the statistics previously obtained by Mad in America, calls to the National Suicide Prevention Lifeline already result in not tens of thousands but hundreds of thousands of people getting psychiatrically hospitalized every year. And when 988 gets implemented, it’s reasonable to surmise that those numbers could increase even more.

Privacy Experts Express Concerns

According to Megan Iorio, senior counsel with the Washington-based Electronic Privacy Information Center (EPIC), current laws restrict how much of their customers’ personal information, including their geolocation, telecommunications providers can disclose to third parties. In some cases, offenders have been fined hundreds of millions of dollars, and police ordinarily have to get a search warrant to obtain the kind of personal information that Vibrant Emotional Health and the National Suicide Prevention Lifeline want to obtain automatically on every 988 caller, texter, or chatter.

Megan Iorio
Megan Iorio

“It’s not clear if there’s any legal authority to do this,” said Iorio. “In fact, there might be Fourth Amendment issues. What’s the exception to the warrant requirement here?… I don’t see it.”

Iorio said that courts have allowed exceptions to warrants if there are circumstances where people already have a “reasonable expectation” that their personal information, home, or belongings might be accessed or searched—for instance, if they call 911 in an emergency, or are crossing an international border.

But when people call the NSPL or any emotional crisis hotline, said Iorio, “It’s not clear that that’s people’s reasonable expectation at all. I would say that it’s the exact opposite. At the Lifeline website, there is nothing there to indicate that forced referral to police is a potential consequence of calling for mental health services.”

Furthermore, Iorio said, the NSPL admits they only consider a small percentage of calls to be emergency situations, while they invite many other kinds of people to call. “Lifeline encourages not just people who are suicidal, but people who just want to talk to a mental health counselor to call. And people who are concerned about other people. So the justification for giving the operators of 988 exact geolocation data for referral to police is incredibly thin.”

Iorio called the prospect of 988 getting built-in geolocation technology “disturbing,” and said EPIC would have formally commented had they known about the FCC discussions. “I think it’s very concerning for people in mental health crisis. Lifeline is presented as a safe place for them to go for help, and instead they can’t access this important resource without being surveilled.”

Many studies have shown that electronic surveillance can have profound emotional impacts. “One of the things [surveillance] does is, it erodes trust,” said Iorio. “If people having mental health crises cannot trust Lifeline or other crisis responders, then what are they to do?”

Iorio was especially concerned in light of the fact that Vibrant Emotional Health and the National Suicide Prevention Lifeline—in essence representing government through their partnership with SAMHSA—are already engaged in collection of at least some callers’ personal information, yet do not appear to be handling even that data responsibly. “I went through the Lifeline website yesterday and could not find a privacy policy for the calls. What happens to the data that they’re already collecting?”

Iorio said the prospect of the NSPL gathering more detailed personal and geolocation information about a much vaster pool of Americans who are experiencing emotional struggles therefore raises serious questions. “In the moment, they might be referring you to the right [call] center or the mental health services that are closest to you. But what happens to that data afterwards? Are they storing it? Are they using it for other purposes? Does that become a target for hackers?”

And those questions become still more significant when it’s easy to imagine that 988 could eventually become a “go-to” number for people seeking virtually any kind of mental health resources, support, or information.

Iorio said EPIC will “definitely” provide submissions to government or the Government Accountability Office if the opportunity arises again. In the meantime, Iorio suggested that concerned people could write to senators or Congressional representatives, or try to draw media or public attention where government representatives might see it. If mental health-related organizations started to speak out against 988 geolocation tracking, instead of in support of it, that could obviously make a difference as well.

Iorio also voiced unease about the precedent that could be set by all this. “If we extend the emergency 911 location data services to 988, Lifeline, and this nonprofit [Vibrant Emotional Health], where does it end? What justification will come next, who else will be able to use it?”

23 COMMENTS

  1. In about 2016 or 2017, in remote mid Michigan, I called the National Suicide Prevention Lifeline out of desperation–NOT because I was suicidal, just the opposite. I wanted to know if they offered any help to people who had been suicide swatted (maliciously false reports of suicide called into police). I had been suicide swatted in 2013 and was still fighting to save my life from the devastation of unnecessary police abduction and illegal psychiatric ward detainment (I was not evaluated before lock up). I was truly suffering inflicted mental torture (still am, minus justice and acknowledgement), though not suicidal.

    The person who answered was clueless, and, I soon realized, a danger to me, about to contact the police, so I hung up.

    This is so scary. Any silver lining? Potentially more people abused by the system will push reform? What great cost.

    Nothing is getting better anytime soon.

    • I agree, Gina. Things are not even going in the right direction. I wound up calling us suicide hotline right around the beginning of covet, March 2020. I can’t remember why I called. I already knew better at that point. They had just put me through another trauma at the local hospital, kept where they kept me in the CIU for a day and talk to me like I was an alien, shot me up with something with four male security guards standing around and then made me walk home alone in the dark (knowing full well I just had surgery on a fractured ankle at the same Hospital).
      I made the call and immediately became furious with the operator telling me, “we’re here to make sure you get the help you need.”. I said, no you absolutely aren’t and hung up. Next thing I know there’s police banging on my door. I told them “I have the virus.”. That’s the only reason they didn’t haul me away again.
      Many of us who’ve survived terrible harm from the system then get punished by being isolated and cast out of society and told by people that we could change our lives if we just tried. That we are choosing to be alone. So much salt rubbed in a wound that never heals.

          • Yes, re: the borderline diagnosis. It’s a neat trick the system uses to shut people down when they try to defend themselves. I got painted with this diagnosis that announces to everyone that I am manipulative and that I will twist everything around to my benefit. I got the diagnosis right around the same time that books like “stop walking on eggshells” were all the rage. Looking back, it was the often treatment providers I encountered who twisted things and at times outright lied. No matter what the situation, they would frame it in a way that I was at fault and that I was somehow taking advantage of them and all of the help they were providing me. All my “friends” and family went along with whatever the treatment providers said, blaming me, because society is brainwashed.
            Experiencing the mental health system as a patient with that DX alienated me from people and made me fearful of the world in ways that I don’t know if I’ll ever recover from. I’ve spent the last 5 years as a agoraphobic often-bedridden hermit with almost no connection to the world.

        • I totally relate to everything here. So well expressed. The deception of “mental health.” More tragic is that our Internet Media oriented society has perpetuated a level of juvenility, mistrust, and lies that “mature” adults should find appalling, making things exceedingly worse. Society is “brainwashed,” but older adults need to recognize this, and not allow themselves to be seduced by those who try and capitalize on the already traumatized world we share. Let me add, that expecting justice for those involved in “the system,” is much like expecting those who legally mutilate and murder (and run the show) to go to admit their guilt, and stand “trial,” not likely.

  2. Where is NAMI and MHA when there are egregious human rights issues.at stake? NAMI and MHA have the numbers to pack these advisory committees and town hall meetings when rights are being eroded but their leadership is too obsessed with major COVID relief funding coming down the federal pipeline to care about something as significant as human rights. This is where the consumer-run organizations care more about their funding than those they purport to represent.

  3. “But until now, no one has suggested throwing open NG911 in unregulated fashion for uses by other people and organizations for entirely different purposes besides 911 emergency response—such as surveilling, tracking, and incarcerating people who are struggling with emotional distress.”

    Pragmatically speaking, is it even wise or morally acceptable to have as a “purpose,” “incarcerating people who are struggling with emotional distress.”

    Why in the world would anyone believe that “incarcerating” a distressed person, would be “helpful” to that distressed individual anyway?

    “But when people call the NSPL or any emotional crisis hotline, said Iorio, ‘It’s not clear that that’s people’s reasonable expectation at all. I would say that it’s the exact opposite. At the Lifeline website, there is nothing there to indicate that forced referral to police is a potential consequence of calling for mental health services.’”

    Most definitely, there should be “informed consent” regarding the potential dangers of utilizing NSPL’s “services” on that website. Although, that could be said for all “mental health professions,” too.

    “… the justification for giving the operators of 988 exact geolocation data for referral to police is incredibly thin.” A woman with a brain, thank you, Ms. Iorio.

    “Iorio called the prospect of 988 getting built-in geolocation technology ‘disturbing,'” oh no! Ms. Iorio is disturbed, no doubt, distressed! Call 988, and send out the cops, with guns a blazing! Just kidding, and pointing out the stupidity of “incarcerating” all distressed people again.

    Being disturbed or distressed, by disturbing or distressing things or events … is a normal human reaction. It is not something that warrants “incarceration,” stigmatizing, and forced neurotoxic poisonings.

    Thank you for reporting on this important topic, Rob.

  4. This is yet another example of how the mental illness system is becoming much more powerful and destructive. Given the large number of people who are losing their freedom through this fraudulent organization, FUNDED BY HUNDREDS OF MILLIONS OF DOLLARS OF GOVERNMENT MONEY. I think this scam ought to be a large focus of our liberation movement. It is worth non-violent demonstrations where we can organize them.

    And this scam fits right in with the drift of American politics toward Fascism/Naziism that we are seeing now. Do I really have to remind psychiatric survivors and our supporters that the first group of people murdered by the Nazis in the Holocaust were the German psychiatric inmates?

    People, we just can’t ignore things like this and continue to give up on activism. I can tell you right now, that there will not be “Alternative Conferences” at the concentration camps.

    I think if we focussed on this issue, we could get the general public to see what psychiatry is up to and how it threatens almost everyone. It is time we come from the shadows and start defending ourselves before it is too late.

  5. As someone once said, when you are told, “I am from the government, and I am here to help.” don’t believe them and run for your lives. Also, never please sink down to their abysmal level and use profanity. No matter your pain, stand tall. Prayer is always better than finding your answers in governmental mishmash. This is the “land of the free, home of the brave” not the land of the governmentally locked up for inhumane reasons. Although we may feel sad and life seems not worth living, any mental illness diagnose is an oxymoron and lies and deception. Their lies about mental illness do not make it a crime, so that makes it an inhumane reason. In pain call no one but God and those you trust. Thank you.

  6. Rob, very admirable work and reporting on this important issue. It’s disturbing they have so little regard for the input of the Lived Experience Committee. The collection of personal data is a human rights issue. The quest for an extra invasion of privacy is very questionable. I hope the work and concerns you have put forth helps to get it revoked.

  7. The border line diagnosis also gave my mother just the ammunition she was looking for and she used it as an excuse to cut me out of her life. Her reasoning, if all the doctors said that I was dangerous and untreatable, then she should just abandon me. That’s what she did along with a ton of other people.

  8. My concern is when I searched for studies to justify the costs of the 988 number with objective research I ended up here. Mad in America is a great organization but ending up here usually means there is no scientific justification for the policy I am researching.

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