People who call, text, or chat to the new national 988 Suicide and Crisis Lifeline are regularly greeted with a generic disclaimer that conversations may occasionally be recorded for quality assurance or training purposes. What callers are not told, however, is that their ensuing “confidential” conversation with a counselor in a time of crises may become part of an ever-growing cache of millions of recordings and transcripts of intimate conversations—and be shared, without caller consent, with researchers, AI developers, and corporations for their own undisclosed purposes in a rapidly growing AI industry.

Privacy experts and users themselves are increasingly concerned—and critical of the lack of transparency from 988Lifeline administrators Vibrant Emotional Health (Vibrant), and of the lack of appropriate oversight from the federal Substance Abuse and Mental Health Services Administration (SAMHSA). Indeed, call-center privacy policies range from sparse or non-existent to contradictory and downright deceptive about what’s actually occurring with 988 conversation data—and Vibrant and SAMHSA are refusing to even publicly discuss the evident problems.

While aggregated data such as numbers of calls, reasons for calls, and demographic information about callers is generally uncontroversial, the recorded or transcribed content of people’s conversations is much more personal.

988 privacy policies—and the dubious lack of them

As part of her work for a forthcoming Trans Lifeline report on crisis hotlines, Liz Latty researched the terms of service and privacy policies for 988Lifeline and many of its participating call centers. Her conclusion about their data sharing practices? “At every turn, they distance themselves from clear, direct, concise, concrete communication on any of this,” said Latty. “There’s a huge, willful effort to obscure anything and everything that they’re doing. It’s not an accident.”

Reviewing more than fifty call center websites randomly for this article, and investigating other sources of information, it was difficult not to reach similar conclusions.

The 988Lifeline involves 200 call centers, and conversation recordings and transcripts are apparently being stored in numerous places—with Vibrant and each call center, and/or with innumerable third-party software platforms that each call center may be using for managing calls, texts, or chats, including iCarol, RingCentral, Coastal, and Vibrant’s own “unified platform.”

Yet many call centers had no visible privacy policies at all, while others were operated by health care companies that outlined their Health Insurance Portability and Accountability Act (HIPAA) privacy obligations but didn’t mention 988 data.

Others had policies covering only website visitors—and even those were misleading. The Markup uncovered that dozens of 988 websites covertly included tracking tools, such as buttons for 988-chat that also sent users’ personal information to Facebook.

Contradictory claims were common. For example, Vibrant promoted 988Lifeline as “a leader in… mental health crisis care” offering “confidential” conversations with trained counselors. However, Vibrant’s less prominent Terms of Service—copied by many 988 call centers—emphasized in large capital letters that talking to a 988 counselor “DOES NOT CONSTITUTE” either “MENTAL HEALTH CARE” or “CONFIDENTIAL” communication.

Electronic Privacy Information Center (EPIC) counsel Chris Frascella called these latter claims a “red flag” that Vibrant wants to avoid HIPAA’s confidentiality requirements for mental health care records. “The fact that they’re saying it suggests that’s what they’re trying to do,” said Frascella.

SAMHSA’s 988 FAQ claimed that calls are recorded for internal “quality assurance” and “training” only, and Vibrant’s website stated, “Any information provided by you or collected on you will not be shared or disclosed with any third party.” Yet elsewhere on its website, Vibrant was openly offering access to 988 data to third parties “for research purposes” that could involve secretly listening in on conversations, reviewing masses of recorded conversations, or cross-linking datasets “that could potentially identify individuals who contacted the 988 Lifeline.” The “Crisis Services Policy” for South Carolina 988 also confirmed that “content of conversations” might be shared with “partners, researchers, or third parties.”

In a joint response to Mad in America, SAMHSA and Vibrant provided assurances that access to personally identifiable information of 988 contacts, such as full names and device numbers, is carefully restricted. But both declined to directly answer any of a dozen other submitted questions about 988 privacy policies and Vibrant’s or any call centers’ sharing or selling of audio or text records of conversations.

Some call centers are definitely profiting.

Sharing conversation data—the scandal that’s worsening

In 2022, Politico exposed that the nonprofit Crisis Text Line (CTL) had created Loris, a for-profit arm developing commercial customer-service software, and had shared with Loris millions of transcripts of conversations with people in crises. An FCC Commissioner urged the Federal Trade Commission to investigate whether CTL had obtained proper informed consent from texters.

CTL claimed the conversations were “anonymized.” However, while device numbers can be removed, during such crisis conversations people share many intimate—and potentially identity-revealing—details about themselves and their activities, workplaces, schools, family, and relationships.

Amid public outrage, CTL turned off the tap to Loris and published more transparent policies. Today, though, CTL is a 988 backup center and still shares records of conversations with third parties.

Tim Reierson was the person who originally drew media attention to CTL’s commercial data-sharing. Since then, he’s spent much of his spare time researching and advocating for better privacy practices at crisis hotlines. “It’s a calling, that I’m unable to leave or walk away from,” he said.

Reierson loved volunteering at CTL. He was profoundly affected by texters who were struggling through much more oppressive or abusive circumstances than he’s ever lived through. “The situations that I listened to would keep you awake,” he said. “And it did keep me awake.”

At the same time, Reierson became inspired by the power of connection—how a fellow human simply “being there,” like hand holding, could help people find their own way to a better place. Over time, within him grew feelings of respect, responsibility, and even protectiveness towards these people he’d never met.

Then he learned how these same people were secretly being used by CTL. Reierson said he found it “deeply offensive” and “felt sick, physically so ill” about their being exploited as fodder for commercial machine-learning products—such as in eCommerce customer services and AI feedback on “agent effectiveness” at crisis call centers.

Reierson believes the much-touted notion that AI can learn “techniques” of compassionate human connection—and help or replace call-attendants—is “pseudoscience” and dangerous. “That is where a door is open to the loss of humanity,” said Reierson. “Analyzing a transcript, they are just words or letters put together in a certain order… The ‘being there’ is important. The warmth coming through.”

Even more, he criticizes crisis lines’ “betrayal” and exploitation of users. Reierson described circumstances that can make people, including children, desperately reach out for the one-to-one privacy that crisis hotlines promise—such as threats of domestic abuse, feelings of shame, or fears of public exposure. And then 988Lifeline secretly records these difficult, intensely personal, private confessions and shares them with others for their own purposes. “I have no tolerance for deception,” said Reierson.

Since the CTL scandal, though, these practices have actually—if somewhat surreptitiously—expanded and become embedded within 988Lifeline.

Intimate conversations make the richest AI

The for-profit company Protocall runs the New Mexico Crisis and Access Line 988 service (NMCAL) and, in partnership with Lyssn, a for-profit developing AI tools for behavioral health, received $2.1 million from the National Institute of Mental Health in 2023. Protocall and Lyssn are using recordings of 988 calls to create software that will purportedly “evaluate the quality of crisis counseling” and teach call-attendants how to “sharpen their skills.”

When I pointed out to Protocall Privacy Officer Laura Schaefer that NMCAL’s privacy policy didn’t disclose how the company handles 988 conversation data, Schaefer said, “We’ve got to do better at that.” Schaefer said that Protocall’s controls on personally identifiable information abide by HIPAA. However, the company doesn’t believe HIPAA applies to recorded conversations. Nevertheless, Schaefer later emailed that Protocall would add a “disclaimer” about using recorded conversations “for research” and would allow individual callers to request that recording be stopped.

The 988 call center Georgia Crisis and Access Line (GCAL) appeared to be operated by the Georgia Department of Behavioral Health and Developmental Disabilities (GDBHDD). GCAL’s website provided no terms of service or privacy policy. It also wasn’t disclosed that, in fact, Georgia’s 988 system is operated by the for-profit company Behavioral Health Link (BHL)—which I discovered only thanks to a tip from Reierson.

GCAL, GCAL’s Steering Committee, GDBHDD’s public affairs office, BHL, and BHL’s privacy officer all did not respond to many messages over months asking about GCAL’s privacy practices.

However, BHL’s own privacy policy said the company is “not a Covered Entity under HIPPA” (sic), and shares data it gathers with “Business Associates”—including Carelon Behavioral Health, subsidiary of the even larger corporate giant Elevance Health. Carelon also directly operates New Hampshire 988 and has research divisions using crisis conversations in AI tools to help deliver telehealth. BHL described using caller data for developing voice analysis technology to assess the “emotional state” of callers, to “predict potential relapses,” and to link call center data with people’s electronic health records.

Elevance media liaison Tina Gaines confirmed via email that Carelon has access to GCAL “data systems” with which the company is doing unspecified “work.” She did not answer questions about Carelon’s uses of New Hampshire conversation recordings.

BHL’s research and development lead is John Draper, Vibrant’s former 988 director—and so perhaps a barometer for this burgeoning industry. While acknowledging in a recent talk that rampant nonconsensual privacy invasions fueling AI development could “break down public trust,” Draper nevertheless called himself a “huge fan” of Lyssn’s work and expressed enthusiasm about the role that AI can play in the future of crisis care.

In a Report to Congress, SAMHSA said “new technologies” would soon be monitoring calls in “real time” and helping call-attendants flag which callers might be at “imminent risk” of taking their own lives and therefore require police/EMS interventions. Ironically, people who’ve been subjected to such unwanted interventions and have asked for recordings of their calls to mount complaints against 988Lifeline have been told by Vibrant that all recordings are “confidential” and they must obtain court orders to get copies of their own calls. (See part one: Dramatic Rise in Police Interventions on 988 Callers.)

For one of those callers, Elle, learning subsequently about 988Lifeline’s data-sharing practices has been one more way that calling 988 has left her feeling used and abused. “I think it’s vastly inappropriate for them to monetize people’s pain and suffering,” said Elle. “And it feels extremely dystopian, and violative and disgusting.”

Simple Solutions

Is Reierson worried about what he sees in 988Lifeline’s privacy policies?

“It’s what I don’t see,” Reierson answered. “We have a basically unregulated environment. There isn’t any restriction on the secondary uses of those conversations. And I feel that SAMHSA and Vibrant Emotional Health, they both are negligent on this issue.”

Jason Kelly of Electronic Frontier Foundation (EFF) was also critical. “If I’m a caller of a helpline, I don’t expect that data from the call to be used to create an AI product. These [uses] are just totally off bounds, or should be, and should be very clear in any policy that an organization would have.”

Kelly raised questions about the risks of calling 988 for people seeking abortions or supporting a child’s gender transitions, especially if calls or recordings get transferred to states where those practices are now illegal. “It really makes me nervous,” said Kelly. “That data privacy issue really matters.”

Asked about such cross-state scenarios, Vibrant and SAMHSA declined to respond.

There would seem to be a solution: A brief, straightforward, highly visible privacy policy covering all 988 call centers that actually does what 988Lifeline advertises it does—protect the absolute confidentiality of all callers. Routinely delete recorded conversations within a very limited time. And implement a process for gathering clear, informed consent from both callers and call-attendants for their conversations to be shared for any research projects.

EPIC’s Frascella believes that the Federal Trade Commission (FTC) could have cause to weigh in. “If you don’t say something in a privacy policy that you should say, then that is an unfair, deceptive act or practice,” he said. “It’s possible that the FTC might have authority to go after some of these [988] service providers.”

Reierson is especially disturbed by how Vibrant and SAMHSA are characterizing 988Lifeline as not a mental health service—thereby removing public legal protections that exist with health services even as 988Lifeline operates like a health service by providing counseling, keeping records on callers, and instigating police wellness checks and mobile crisis team visits with or without consent. “That makes 988 dangerous,” he said. “If we continue on as we are, these problems of accountability are just going to entrench further.”

The post “Confidential” 988 Conversation Records Shared with Corporations appeared first on Mad In America.

Two years and a billion dollars in, the 988 Suicide and Crisis Lifeline continues evolving rapidly. Vibrant Emotional Health (Vibrant), administrators of 988Lifeline under contract from the Substance Abuse and Mental Health Services Administration (SAMHSA), has spawned a political lobbying division that’s helping usher state infrastructure investments and legislative initiatives. The developments are aimed at gradually reshaping a loose network of call centers into a coordinated access hub for America’s “crisis care continuum” and mental health service system.

However, none of this is stemming the stream of 988 callers who receive unasked for, unwanted, or unexpected visits from police and emergency medical services (EMS)—and then get taken, with or without consent, to hospitals or crisis centers for mental health evaluations. Some report having been further subjected to forced stripping, solitary confinement, prolonged detentions, and even involuntary treatments.

Callers to 988 targeted by these practices describe feeling misled, betrayed, and ultimately battered by their experiences. And, contrary to 988 promoters’ promises of “getting police out of crisis care” and previous public assurances from SAMHSA and Vibrant about the low frequency of these police/EMS interventions, stunning new data show that the intervention rates have in fact skyrocketed—quadrupling in 988’s first year. And rates of police/EMS interventions on callers who discuss suicidal feelings appear to be even higher.

Openness is risky

A California-based mental health advocate and speaker, last summer Emily Wu Truong was distraught near the anniversary of her father’s death. She was out walking late at night, and didn’t want to bother relatives or friends, so she called 988.

Truong said she was not actively suicidal, but called so she could confidentially open up about her sadness and suicidal feelings—what 988Lifeline ads say the service is for. “I wanted to be anonymous while processing my emotions,” she said.

Truong did not know, and her local call center’s website did not disclose, that 988Lifeline’s “imminent risk” policy requires call-attendants to potentially contact 911 to trace calls and send out police/EMS if a caller expresses “a desire and intent to die and has the capability of carrying through.” NextGen911 allows tracking mobile devices to within three yards and, typically, police/EMS then take these callers—with or without consent—to a hospital or crisis center for psychiatric evaluation. Some call centers have started disclosing this practice, but often still mislead users; for example, SAMHSA’s 988 website says that call-attendants contact 911 only when there is “an immediate risk to life”—yet the actual policy explicitly states that it should be applied far more broadly.

The goal is to stop callers from killing themselves. But studies show that, for every person who’ll actually kill themselves, hundreds of others have desires and plans. Even experts barely beat random chance in predicting suicides.

People like Truong can get ensnared. In conversation, her emotions are close to the surface, and frequently flow out as expressively as the colorful outfits she often dons. It’s easy to laugh along with her exuberance—and tear up or fret about her sorrow. “I’m very public about my emotions and expressions,” Truong acknowledged. “So [the 988 call-attendant and first responders] were probably overwhelmed and at a loss. They didn’t know how to handle my over-expression. I was crying a lot, too.”

While pouring her feelings out to the 988 call-attendant—including without filter mentioning exactly where she was—paramedics arrived. Truong was taken to a noisy emergency room, forced into scrubs, monitored in the bathroom, put in solitary confinement, restrained in a gurney for transfer, and then detained in a psychiatric hospital. The experience, she said, felt like she wasn’t in a helping setting but “in a jail.” She was offered drugs but no therapy, and after two days of stress wondering why she couldn’t leave, she was sent home with $4,500 in medical bills.

“How does this promote healing?” Truong said, furious that a few people “overreacting” to her open emotions led to her psychiatric incarceration. “It’s traumatizing. It’s a living nightmare.”

When she asked for the recording of her call to buttress her complaints to 988Lifeline, Vibrant told her she’d have to get a court order—a policy Vibrant has implemented.

“If you want people to trust you, you need to show transparency,” said Truong. “Where’s the accountability?”

Elle has the same question—she felt threatened by the call-attendant and also got detained, and Vibrant refused to release the recording of her call as well.

Go to a hospital—or else

Elle (not her real name), a law student in her early 20s, often experiences traumatic flashbacks from a history of sexual assaults. A therapist recommended 988.

Last autumn, Elle called. “I just wanted somebody to walk me through those flashbacks and do things like grounding techniques or breathing exercises,” she said. “It’s just really nice to have another person as an anchor.”

Elle found the 988 call-attendant helpful. After ten minutes, though, the call-attendant asked her what city she was in, then abruptly transferred her call to that city.

The new call-attendant immediately pressured Elle for her full name and address—repeatedly. “Given the nature of my history, which involves stalking and assault, I was very, very uncomfortable giving her this information,” said Elle.

The call-attendant also asked Elle if she was suicidal—repeatedly. “I wasn’t suicidal. But I might have said something like, ‘I want all of this to stop.’ Meaning, my flashbacks. I was having severe flashbacks throughout this.”

The call-attendant asked if she was going to kill herself how would she do it. “She just kept pressing this issue of suicidality,” said Elle, who was not told she was being put through 988Lifeline’s risk-assessment. “I felt like I needed to answer. I felt like I couldn’t hang up. In the situations that I have been in with predators, I often found that the path of least resistance was the path that led to the least pain; so, you do what they want.”

Elle suggested she might jump from a nearby high-rise or obtain pills. The call-attendant then insisted that Elle drive to a psychiatric facility. Elle declined. “She told me that if I did not come in, she would have to send the police to my house.”

Elle drove herself. “I very much did not want the police to come and drag me out of my apartment.”

At the psychiatric facility, staff took away Elle’s belongings, including her smartphone and, over Elle’s pleas, a bracelet she’d worn every day since her late-grandmother gifted it.

Elle had never experienced psychiatric incarceration. “I didn’t know what was happening,” she said. “I was very terrified… Every access I had to the world was taken away from me. I could not keep the small things that might have brought me comfort.” She was confined in a room about six feet by nine with three chairs and a blacked-out window. She knew from her law studies that seclusion is extremely dangerous for prisoners—but never imagined she’d experience it herself. She pulled two stiff chairs together and curled up across them, hugging herself for warmth.

Hours later, two men strapped her to a gurney and drove her to a psychiatric hospital. After hours more waiting alone, Elle was ordered to sign intake forms.

“One of the forms was whether I was allowing myself to be admitted voluntarily or whether it was an involuntary admission.” Elle asked, if this was a voluntary admission, then could she leave? The admissions coordinator told Elle that if she didn’t sign in voluntarily, the detention would last much longer. By this point, Elle said her flashbacks had retreated and her “lawyer mind” was “kicking in.” She stifled an impulse to reply, “Fuck you, you goddamn bitch.” Later, Elle would study her state’s commitment law and submit complaints about the institution’s processes.

Over the next four days, Elle and others were corralled into a common room by day, where male patients frequently sexually harassed the younger women. One man talked about clothing he wanted to see Elle wearing, put objects she touched in his pants pockets, and described wanting to track her down outside hospital. By night, with no lock on her room’s door, Elle didn’t sleep.

“I wasn’t suicidal going in, but I sure was coming out,” said Elle.

In its April 2024 Report to Congress, SAMHSA admits “no research” validates 988Lifeline’s emergency intervention policy—while some research suggests psychiatric hospitalization may well heighten suicidality. Elle has frequent nightmares about the hospital, and scans streets for the threatening male patient to “make good on his promises.”

For Elle, involuntary psychiatric detention “was like being assaulted again, but in your entire brain, and also your soul.” With disturbing, visceral imagery, Elle described her experiences of sexual assault as being treated like an animal “valued” only for its “meat.” But in the psychiatric hospital, she said, “It’s like I was a rat, or a gnat… I don’t think it mattered to them whether I lived or died, beyond their own legal liability.”

After learning more about 988Lifeline’s intervention practices, Elle said, “It’s really frightening and inappropriate that somebody can ruin your life based on a ten-minute phone call.”

Vibrant and SAMHSA have long publicly said less than 2% of 988 calls lead to such police/EMS interventions and hospital detentions—but haven’t released actual data. Through a freedom of information request, Mad in America confirmed this rate from a 2017-18 national survey of crisis call centers.

Vibrant has also claimed that many emergency interventions occur “with consent” of callers, but former call-center staff challenge such characterizations. Notably, since Elle drove herself to hospital and Truong disclosed her location, both interventions would apparently be listed as “with consent.”

Recent data from one major 988 call center shed light on exactly how, and how often such interventions truly occur.

Types of intervention, levels of coercion

The New Mexico Crisis and Access Line (NMCAL) is operated by Protocall, a company that also runs hotlines for schools, communities, and corporations.

Wendy Linebrink-Allison, Protocall’s New Mexico Program Manager, said that their 988 contract with the state mandates aggregated public reports. Protocall supports the practice for providing insights about who’s calling and why. “It has really benefited our community partners,” said Linebrink-Allison. “They’ve always expressed appreciation.”

Linebrink-Allison understands criticisms of unwanted interventions by people like Elle and Truong. “I want to encourage people to continue to share their voices to facilitate change,” she said. But she worries negative stories can make people wary of calling. “I don’t want, at any point, people to feel like there’s no place for them to call.”

The data alone might make some feel that way.

Many 988 call centers, including NMCAL, still also take calls through a local 800-number crisis line, and combine data. Overall, police/EMS interventions occurred on 3.5% of all calls to NMCAL. (In most of the data discussed in this story, “contacts” or “calls” to 988 through text, chat, and phone are combined.)

However, the majority of calls to NMCAL don’t involve people discussing troubles. Protocall defines “clinical calls” as those involving someone discussing a serious concern instead of, say, just seeking information. According to their year-end report, clinical calls composed about 40% of their crisis line contacts in 2023.

For these clinical calls, NMCAL’s data describes interventions such as getting callers to contact 911 themselves, making a conference-call connection involving caller, call-attendant, and 911 dispatcher, and contacting 911 without caller consent.

Linebrink-Allison said these reflect the steps their call-attendants take. “We want to make sure that we’re involving people in their decisions, and we’re allowing people choice and a voice… We don’t threaten people… We encourage people to engage in what is best for them.”

Still, on average in 2023, at least 6.3% of clinical calls led to interventions apparently involving pressure or coercion, with 911 or police contacted by call-attendants rather than by callers.

Furthermore, only 27% of clinical calls involved people talking primarily about suicidal feelings, as opposed to work stresses, anxiety, substance abuse, or other concerns. People with suicidal feelings were targeted for coercive interventions much more frequently—in 15.1% of cases.

In other words, people primarily discussing suicidal feelings had odds of nearly one in six of getting an unwanted visit from police/EMS.

These rates seem high compared to SAMHSA and Vibrant’s claims—however, stunning new national data shows NMCAL implements such interventions less frequently than average.

Skyrocketing rates of interventions

A recently-released national survey conducted by NRI, the research arm of the National Association of State Mental Health Program Directors, gathered data on 3.5 million calls in 2022—about half to 988 call centers and half to non-988 centers (including centers that answer both 988 and local 800-lines). The survey found that, of all contacts, 3.6% resulted in law enforcement being dispatched, 1.9% resulted in EMS dispatch, and a further 2.3% of calls were transferred to 911 “which may have then dispatched law enforcement or EMS.”

In total, then, 7.8% of all contacts of all types received police/EMS interventions—nearly four times the rate previously claimed by Vibrant and SAMHSA.

What’s also striking are the wide variabilities; in one state, over 17% of all callers got police visits, and in many others, below 2%.

How many people does this represent? During that first year following the launch of 988 in 2022, the 988Lifeline handled about 5.2 million contacts. So, more than 400,000 callers that year received visits from police/EMS, and were likely taken to psychiatric institutions.

Mobile crisis teams (MCTs) are touted as a less-coercive alternative. But according to the same survey, 16.9% of calls resulted in MCTs being dispatched—and MCTs got hundreds of thousands more people taken to hospital emergency rooms or crisis centers.

When I presented the striking NRI findings to Vibrant and SAMHSA, they declined to comment, and did not provide other data.

Since many non-988 crisis lines implement interventions as well, the total numbers of people around the country affected each year are still higher.

Told of the 988 numbers, Truong cried, “People are just trying to find a helpful listener to validate and hold space! It’s fucking unacceptable.”

“I feel appalled,” said Elle. “Horrified. Angry. It makes you wonder how many of those people will never recover.”

Liz Latty helped research a forthcoming Trans Lifeline report on crisis hotlines, focusing on experiences of users from marginalized communities—including BIPOC, LGBTQ+, and self-identified disabled and mad people. Latty said many described damaging long-term impacts from these unwanted interventions on their privacy, safety, sense of identity, finances, and more. “It devastates people’s lives,” said Latty.

What’s driving it?

Since Vibrant and SAMHSA have for years refused to publicly release data on these interventions, it’s unclear if the rates have risen steadily across the country since 2018, or if the launch of 988 precipitated a sudden, massive increase.

The latter is certainly plausible: Early on, even proponents of 988 worried what might happen with a huge upsurge in calls coupled with no significant increases in mental health supports in communities to direct people to.

There could also be other factors at work.

It would obviously be simple to change the policy to implement interventions only with expressed consent of callers. And indeed, partly due to criticisms of the imminent-risk intervention practices from inside and outside 988Lifeline, during the original drafting of 988 legislation, the federal government declined Vibrant’s requests for direct access to 911’s call-tracing technology. Congress instead ordered a stakeholder consultation. However, the software company RapidDeploy has developed a technical workaround. Already installed by Mental Health America of Greenville County (MHAGC), 988 call-attendants in South Carolina can connect directly to 911’s call-tracing system. RapidDeploy said in 2022 that South Carolina was “the first of many states.” These and other tightening relationships between 988 and 911 could be part of what’s driving the rising rates.

Neither MHAGC nor RapidDeploy responded to requests for interviews. SAMHSA and Vibrant declined to respond to questions about 988Lifeline uses of RapidDeploy.

SAMHSA also hinted to Congress that Vibrant could be using “new technologies” to “enhance the precision of identifying imminent risk situations”—in other words, AI bots may be monitoring calls and flagging people for police/EMS interventions, as occurs in Canada’s 988 system. Such alerts could generate bias or even put pressure on call-attendants.

Even as these questions hang in the air, though, SAMHSA’s obscure remarks to Congress about new technologies and 988 serve as a cryptic warning about a vast new frontier opening up for entirely different kinds of breaches of confidentiality and privacy. There appears to be a goldrush on among researchers, AI developers, and corporations as Vibrant and 988 call centers have started sharing recordings and transcripts of the intimate voice, chat, and text conversations of people contacting 988.

In the second part of this series, Rob Wipond takes a deeper look into these issues around privacy and the sharing of the contents of conversations for AI development.

The post Dramatic Rise in Police Interventions on 988 Callers appeared first on Mad In America.

Large state hospital asylums started closing decades ago, but promised community beds and services never came. As a result, today, there’s a disastrous bed shortage and huge populations of untreated, severely mentally ill people are homeless or in prisons.

Any numbers provided are close to these:

In the 1950s, there were about 550,000 state hospital psychiatric beds, or 330 beds per 100,000 people. Today, there are only 37,000 state hospital psychiatric beds, or about 11 beds per 100,000 people.

For the past two decades, this story has been regularly re-told everywhere from popular right-wing periodicals like The Wall Street Journal, National Review, and Breitbart, through mainstream and left-liberal sources like The New York Times, NPR, PBS, The Daily Beast and The New Yorker, to investigative news outlets like Mother Jones and Kaiser Health News. The story also plays a central role in political lobbying by mental health organizations and providers, in Democrat and Republican platforms, and in public education by the Substance Abuse and Mental Health Services Administration (SAMHSA).

Essentially, this deinstitutionalization disaster story has become a culture-wide dominant narrative. It has fueled beliefs that compassionate improvement of the mental health system—and help for the unhoused and imprisoned—requires bringing back more psychiatric beds and coercively treating more people. Even those who critique pro-force sentiments in outlets like The Nation nevertheless frequently echo the dominant narrative’s basic elements.

However, in 2017, the U.S. National Association of State Mental Health Program Directors (NASMHPD)—the people who actually oversee America’s mental health systems—quietly fact-checked this dominant narrative. Their resulting report showed that these oft-repeated bed numbers are not only inaccurate but wildly misleading.

And from the real numbers, there emerges a fundamentally different portrait of America’s mental health system, its impacts on society, and what’s gone wrong. It’s a picture of an America where there’s never in history been more psychiatric beds per capita, or more widespread psychiatric monitoring and coercion.

Where and why did the viral disinformation start?

If you’ve ever been a psychiatric patient or worked in community mental health in America or, like me, regularly talked with people from both these groups, something quickly becomes obvious: State hospitals rarely get mentioned. Much more commonly, people mention general hospital psychiatric wards, private psychiatric hospitals, group homes, assisted living facilities, nursing homes, and other institutions and services. And in fact, only 1.6 percent of people getting public mental health care in 2020 got it in state hospitals.

So, why has so much public attention focused on state hospital bed numbers?

Reading the above-cited news stories, the answer becomes obvious: Every one cited, quoted, was co-written, or otherwise involved the Treatment Advocacy Center (TAC), its oft-quoted report about declining state hospital bed numbers “Going, Going, Gone,” and/or TAC’s founder, psychiatrist E. Fuller Torrey. And not coincidentally, rivaled perhaps only by the National Alliance on Mental Illness, TAC and Torrey have long been this country’s most well-funded and influential lobbyists for expanding forced psychiatric treatment. Indeed, when New York Mayor Eric Adams recently called for more aggressive uses of psychiatric detention powers, The New York Times dubbed it a “coronation” for TAC and Torrey.

TAC and Torrey have focused attention on eye-catching state hospital bed-number declines to help push their campaigns for expanding coercive treatment, and they’ve been extremely successful. In my book Your Consent Is Not Required: The Rise in Psychiatric Detentions, Forced Treatment, and Abusive Guardianships, I show the consequences: Rates of coercive psychiatric interventions have been rising dramatically for several decades as broadening mental health laws get used against ever-wider ranges of people and in many institutions from schools, government housing, and workplaces to mental health hotlines and nursing homes.

So, how can coercive psychiatric interventions be rising amid a purported catastrophic shortage of beds? The answer is that “bed capacity” in the United States has steadily expanded in step with that rise.

Resurgent interest in the facts

TAC and Torrey’s story has rallied support for increased mental health funding and more aggressive forced drugging laws, but it’s always been too far divorced from reality to guide on-the-ground, day-to-day decision-making. Knowledgeable mental health system leaders know that most beds and services today are outside state hospitals, and that expanding hospital psychiatric care is, by far, the most expensive of all possible options. And even the American Psychiatric Association (APA) quietly recognizes that scientific evidence of the helpfulness of psychiatric hospitalization is “absent.”

So, no new large asylums have been built. Instead, under mounting public pressure to solve the nation’s seeming “mental health crisis,” mainstream mental health system leaders are showing a resurgent interest in understanding how many psychiatric beds of which types actually do exist in America, and may optimally be needed.

One question that needs answering first is, “A half-century after most asylums closed, what is a psychiatric bed today?”

A team of researchers from the RAND Corporation recently published a viewpoint in JAMA Psychiatry, “Estimating Psychiatric Bed Shortages in the US.” The authors described it as “worrisome” that “there are no standardized approaches or best practices” for determining what a “psychiatric bed” is—let alone how many are needed or what causes an apparent “shortage.”

Broadly, publicly funded psychiatric beds can be divided into two main categories:

Category 1: Inpatient beds in hospitals or hospital-like settings that are able to provide 24/7 intensive psychiatric care.

Category 2: Residential beds in the community where people labeled with mental illnesses live in home-like settings and receive any of varying amounts of publicly funded voluntary or involuntary mental health treatments and practical supports.

In the 1950s, asylums were the predominant location for both of these categories of beds. Today, there are many variants of both, and the divisions are not always clear cut—for example, residential treatment centers are inpatient institutions that also have residential beds.

There also aren’t standardized, completely reliable ways to find and count psychiatric beds, the RAND authors explained.

Generally, a facility’s bed numbers are included in licensing information—however, at any time that number may not correspond to staffed beds, different types of facilities may be overseen by different government departments, and some common bed types, such as supportive housing for people labeled with mental illnesses, may not require licensing at all. One can also count psychiatric “patients in beds” on one selected day—but any day may not accurately reflect other days or full capacity. Another method is to count an institution’s “discharges” linked to treatment for mental disorders.

Then, to understand shortages, one has to track how different types of beds and services interact. For example, there may appear to be a shortage of hospital psychiatric beds when there’s actually a shortage of supportive housing to move people into when they’re ready for discharge from hospitals. Or, when patient case managers don’t have access to frequently updated directories of all available beds in their area, then shortages can seem common even when they’re not.

Consequently, counting psychiatric beds and illustrating trends across time and population changes involves “cobbling together” data from different sources, drawing estimates from studies and surveys that may have been done in different years in different ways, and “roughing in” calculations. Yet, the very complexity highlights the operational importance of gaining better understanding.

So, the NASMHPD decided to take on the task of counting psychiatric beds in America. And their data and analyses make it clear that the dominant narrative about deinstitutionalization is completely off-base.

The reports that are shifting the dominant narrative

As of 2023, there are four related reports that, together, have started to shift the dominant narrative.

Most importantly, published in 2017 by NRI, the research institute of the NASMHPD, the report “Trends in Psychiatric Inpatient Capacity, United States and Each State, 1970 to 2014” provided a comprehensive, nation-wide count of beds in category 1—inpatient psychiatric beds in hospitals or hospital-like settings.

In 2019, SAMHSA issued “Civil Commitment and the Mental Health Care Continuum.” This report drew on the NASMHPD report’s data and examined how psychiatric bed numbers and types have changed historically alongside changing standards of coercive care.

In 2022, the APA released “The Psychiatric Bed Crisis in the U.S.: Understanding the Problem and Moving Toward Solutions.” The APA also drew on the NASMHPD report’s data and began to do modeling of how many beds of which types might be required to provide an optimal continuum of care in a typical community.

Later in 2022, the NASMHPD published an update to its own report, showing bed-number trends to 2018.

In this review and analysis, I’ll refer to these reports as the NASMHPD, SAMHSA, and APA reports. I also interviewed Ted Lutterman, lead researcher for the NASMHPD reports, in 2021 for my book, and again in 2023 for this article.

In conversation, Lutterman has repeatedly made the gist of his findings clear: “E. Fuller Torrey or others are always talking about how there used to be half a million people in state hospitals, and if we had that number of beds today, at equivalent rates, we’d need so many beds.” However, Lutterman said, the widely cited numbers promoted by Torrey, TAC, and many politicians and media outlets “just don’t add up.”

Both the APA and SAMHSA reports also challenged TAC and Torrey’s main claims. The SAMHSA contracted-researchers accused “E. Fuller Torrey and colleagues from the Treatment Advocacy Center” of promoting bed numbers and comparisons that were neither “apt” nor truly “meaningful.” Irked by inflammatory claims that prisons are “the new asylums,” the researchers countered that “nearly 20 times more people with a serious mental illness today receive care in the nation’s public mental health systems than are housed in its jails and prisons.” In a similar vein, the APA report noted that every study that has actually tracked discharged asylum patients found that only miniscule percentages ever became homeless or imprisoned.

So, what do the real numbers show?

First, there were nowhere near as many psychiatric beds in the 1950s as Torrey and TAC have continually claimed.

How many inpatient beds existed in the era of large asylums

In the 1950s, nearly all psychiatric beds in America were in state/county hospitals. The NASMHPD reports pointed out, however, that state hospitals in that era held many non-psychiatric patients as well. The SAMHSA report similarly acknowledged (as did the APA report) that “large swaths” of state hospital patients used to include people with tuberculosis, epilepsy, syphilis, elderly dementia, alcohol problems, and intellectual or developmental disabilities. These are people who today receive services in other types of facilities that have themselves increased immensely in number over the decades, such as ordinary medical hospitals, nursing homes, “sober homes,” and institutional homes for people with intellectual and developmental disabilities.

Focusing on psychiatric beds only, Lutterman found reliable data showing that, even as late as 1969, only 58 percent of state hospital patients were psychiatric patients. So, the actual number of state hospital psychiatric beds in 1969 was 42 percent lower than the number commonly cited in the dominant narrative.

Although the percentages from the 1950s appear to roughly parallel the 1969 numbers, Lutterman told me that he was reluctant to use that data due to the murkiness of both psychiatric diagnoses and state hospital admission criteria in that era. I asked him if he generally believed the true percentage of non-psychiatric beds in state hospitals would have been smaller or larger in the 1950s. “It’s unclear, but it sounds like it would be even larger,” Lutterman answered. “[State hospitals] were sort of a catch-all place [for people] that society didn’t know what else to do with.”

So, there were not 550,000 state hospital psychiatric beds in the 1950s, but more likely, at most, 58 percent of that number—about 319,000 state hospital psychiatric beds. Roughly accounting for national population changes during that decade, this was about 190 state hospital psychiatric beds per 100,000 people in the 1950s.

And by comparison, how many inpatient psychiatric beds exist in America today?

Counting category 1: The number of inpatient psychiatric beds that exist today

As the so-called “deinstitutionalization” movement gained traction from the 1960s to ‘80s, large state and county hospitals were closing. However, contrary to the dominant narrative, smaller psychiatric hospitals, institutions, and community-based beds, facilities, and services began multiplying and receiving enormous increases in funding.

In reviewing this history in the NASMHPD reports, Lutterman focused on counting “inpatient” beds—hospitals or hospital-like residential facilities. Aside from state/county hospitals, these include:

• Private psychiatric hospitals
• General hospitals with psychiatric wards
• Veterans Administration (VA) medical centers
• Community mental health centers
• Residential treatment centers
• Other crisis care facilities

VA and state hospital bed numbers have indeed declined a lot, but Lutterman found that bed numbers (or the total number of patients on a selected day) in many other facilities increased considerably from 1970 to 2018. Beds in private psychiatric hospitals increased nearly five-fold to 54,396. Residential treatment center beds nearly tripled to 36,845 beds. Beds in general hospitals more than doubled to 40,530.

Among these, Lutterman found 187,877 inpatient psychiatric beds in America in 2018. That’s about 57 beds per 100,000 people—five times as many inpatient psychiatric beds as the “11 beds per 100,000” number that is commonly publicly cited in deinstitutionalization disaster stories.

And Lutterman found still more.

Nursing homes exploded in number in the late 1950s and ‘60s, supported by enabling legislation and the launch of Medicare and Medicaid. Although mainly for frail seniors, the reports from NASMHPD, SAMHSA, and the APA all acknowledged that nursing homes have become a common inpatient setting where psychiatric patients also get placed. These include large numbers of adults who are not elderly and/or do not have dementia or disabling physical conditions. No one is formally tracking how many ordinary psychiatric patients stay in nursing homes, but in some states thousands have been identified in Department of Justice lawsuits targeting them as unnecessarily restrictive, coercive settings for most psychiatric patients.

Since these are usually people diagnosed with serious mental illnesses, Lutterman used data quantifying the number of nursing home residents diagnosed with what are typically regarded as serious mental illnesses: bipolar disorder or schizophrenia. These comprised 13 percent of nursing home residents. Lutterman advised “caution” about the precision of the number, but this calculation added 223,917 patients—another 67 beds per 100,000 people.

The table below shows the main types of inpatient psychiatric beds in America that Lutterman could reliably quantify—with corresponding calculations of beds per 100,000 people to facilitate comparisons over time relative to population growth.

In total, the NASMHPD report identified 411,794 inpatient hospital and hospital-like psychiatric beds in America, or 124.5 beds per 100,000 people.

This is now more than ten times as many inpatient psychiatric beds as the “11 beds per 100,000” number that has been most commonly publicly cited.

By direct comparison, then, in 2018, America had more inpatient psychiatric beds than in the 1950s—411,794 beds compared to about 319,000. Accounting for population growth, in the 1950s, there were about 190 state hospital psychiatric beds per 100,000 people while, in 2018, there were 124.5 beds per 100,000 people.

So, there’s been at most a one-third reduction in inpatient bed numbers per capita between the 1950s and 2018. It’s not insignificant, but hardly the catastrophic 96 percent decline that deinstitutionalization disaster stories claim.

This is where Lutterman stopped formally counting. However, he pointed to many more types of psychiatric beds where the numbers were difficult to quantify, but likely very substantial. One of these was category 2, community residential psychiatric beds—and wherever we can find numbers for them, they are revealing.

What community residential psychiatric beds are and why they’re important

Providing long-term residency, with ongoing psychiatric care and support with daily living, was a key role that state hospitals played for many people in the 1950s—and, as discussed extensively in all four reports, moving those patients into community-based residences was a primary goal of deinstitutionalization.

Today, such residences can include, for example, publicly funded private or state-owned small group homes, large congregate care housing, independent-living or assisted-living facilities, supportive housing, government-subsidized apartments, and so on. When these are tailored and funded as psychiatric beds, residents will be getting anywhere from low- to high-intensity monitoring, mental health interventions and treatments, and practical daily supports—often via “Assertive Community Treatment” (ACT) or similar “case management” teams.

Like psychiatric hospitals in the 1950s and today, community residential psychiatric beds can vary in quality—but it’s not possible to reasonably discuss deinstitutionalization without including them.

I asked Lutterman if he agreed it was reasonable to say that, to get an accurate total count of psychiatric beds and to compare today with the 1950s, community residential psychiatric beds must be included. “It is,” Lutterman answered. “The question is, how to get that number?”

Community residential psychiatric beds are not nationally tracked. And depending on the type of facility or residence, Lutterman explained, it may not be licensed by any government agency at all. It may be owned or rented by the client/patient or a private company rather than a public agency, and the housing subsidies, psychiatric services, and supports may be coming through any of a variety of funding streams at local, county, state or federal levels.

Consequently, a reasonably functional “continuum of care” and plan for addressing bed shortages in any community would require having a centralized, frequently updated listing or data repository of currently available beds of all types—yet stunningly, few states have them. In 2019, SAMHSA and the NASMHPD launched a collaboration to help states begin building electronic registries of psychiatric beds. These efforts are still nascent in most states, though.

I found five states that were able to provide what appeared to be reasonably organized and reliable data on community residential psychiatric beds.

Counting category 2: Numbers of community residential psychiatric beds

Connecticut has a bed registry dashboard and New Jersey provided data showing, respectively, about 29 and 39 adult community residential psychiatric beds per 100,000 people in those states. Maryland provided a list that identified 46 adult beds per 100,000 population. However, it became apparent that these were likely low-end, partial numbers, when I found states with more comprehensive tracking of other common types of beds as well—notably, these are the two states where the public clamor about alleged bed shortages has been the loudest in recent years.

The New York State Office of Mental Health (OMH) data dashboard describes and tracks many types of specialized, supportive community housing for people labeled with serious mental illnesses, including “Apartment Treatment,” “State-Operated Community Residence,” “Supported Single Room Occupancy,” and more. According to an OMH spokesperson, and confirmed in the dashboard, the state “funds more than 48,000 units of housing for individuals with mental illness.” In New York, these add 246 adult community residential psychiatric beds per 100,000 people.

In California, the state’s community bed tracking is poor, but it does carefully track its primary community-based psychiatric support system, called “Full Service Partnerships” (FSPs). As of 2021, there were 71,384 people enrolled in FSPs. These programs provide housing as needed and “intensive” psychiatric treatments and other supports for people who are labeled as having “severe mental illness” and at risk of homelessness. According to UCLA’s Sam Tsemberis, who has studied FSPs, these people are typically getting housed in unlicensed, subsidized locations like apartments, rooming houses, and independent living facilities—but, he estimated, as many as 15-30 percent of clients remain essentially unhoused. So FSPs represent closer to about 55,000 beds or 141 community residential psychiatric beds per 100,000 people in California.

About one-third of California’s FSP clients are children and youth, of which many are in foster family homes—a reminder that all states also have community-based residential psychiatric beds in their foster-care systems. A recent study found that, in 2016, some 35 percent of children in foster care were also getting psychiatric care. That same year, about 374,000 children and youth in total were living in group or family-style foster homes (as distinct from hospital-like foster-care institutions). This would then comprise about 131,000 community residential psychiatric beds, or 40 beds per 100,000 people.

In all five of these states, the psychiatric bed count now surpasses the average number of beds per 100,000 people in the 1950s. Before we do a complete tally, though, it’s important to briefly mention some of the other beds that are still missing from the count.

Large numbers of other inpatient and residential psychiatric beds

There were other major types of beds that were not included in Lutterman’s counts because he couldn’t find sufficiently clear numbers for them. In some cases, there were also questions as to whether the beds should “appropriately” be counted as psychiatric beds. Here, the lack of standardized definitions for what constitutes a “psychiatric bed” becomes relevant. For example, many people today get involuntarily psychiatrically detained in hospital emergency room beds for significant periods. Yet some might argue that emergency room beds shouldn’t be counted, because chaotic emergency departments are inappropriate settings for psychiatric care. But by that logic and standard, we’d have to exclude any “inappropriate” facilities from these counts—starting with the many reportedly decrepit, overcrowded, chaotic, abusive state hospitals of the 1950s.

With that in consideration, these are some of the other major types of public beds earmarked today for people labeled with serious mental illnesses that have not yet been counted (see the Appendix for more details about these types of beds and where the estimates come from):

• Many beds for children and youth in inpatient-like residential psychiatric facilities (as distinct from family-style foster homes) exist outside common tracking systems—including in the so-called “troubled teen industry” and out-of-state institutional foster-care settings. This could be another 158,000 inpatient-residential psychiatric beds.
• In prisons and jails, there are both formal inpatient psychiatric units and the equivalent of residential psychiatric beds—together, these appear to comprise about 288,000 beds.
• “Scatter beds” are general beds in community hospitals that sometimes get used for psychiatric care. These beds hosted about 121,000 patients in 2014.
• Many mental health visits to hospitals, voluntary and involuntary, result in people getting “boarded” in emergency room beds. Boarding is usually defined as periods lasting from six hours to days, weeks, or months—already in 2008, this comprised 1.7 million patients annually.
• An unknown percentage of some 988,000 people in nursing homes diagnosed with either depression or anxiety disorders or both may actually be ordinary psychiatric patients (without dementia or debilitating physical conditions). Even a low percentage could represent a significant number of beds.

Getting to the totals: Adding inpatient and community residential psychiatric beds together

Based on the national averages for inpatient beds from the NASMHPD reports, and the other data gathered, we can now do a final tally (see the table below).

In America’s state hospital asylums in the 1950s, there were about 190 psychiatric beds per 100,000 people. Today, there appear to be between 193 and 410 psychiatric beds per 100,000 people. That’s anywhere from slightly more beds to more than two times as many beds per capita as existed in the 1950s. Adding in the best estimates for missing child and youth beds and prison beds, the number today is between 328 and 545 psychiatric beds per 100,000 people—approaching three times as many psychiatric beds as existed in the peak era of state asylums.

If we had reliable ways to calculate for the number of scatter beds, missing nursing home beds, and 1.7 million or more psychiatric patients in emergency rooms each year, the total might skyrocket beyond what existed in the 1950s.

There are still many estimates and gaps in these numbers. Yet, at the very least, it is abundantly clear that the dominant narrative is completely misleading.

So, what does it all mean?

America’s expanding systems of psychiatric coercion

The dominant narrative has long stated that America has 96 percent fewer psychiatric beds than in the 1950s which, combined with a desperate lack of funding for community beds and services, has led to legions of untreated, seriously mentally ill people “falling through the cracks” of the system and ending up homeless or in prisons.

This deinstitutionalization disaster story has been extremely effective for generating public support for increased mental health funding and expanded coercive interventions, while excusing the system’s every visible, chronic failing. It’s also given conservative and liberal politicians and journalists alike a simplistic, convenient narrative that can, at will, divert criticism away from innumerable other issues and policies that are worsening inequities, injustices, and violence across society.

This dominant narrative is so popular, even the mainstream organizations that have helped debunk it seem reluctant to let it go completely. Neither the NASMHPD, SAMHSA, nor the APA have been vigorously promoting the true bed numbers; worse, to varying degrees, their reports all partially disguised them. For example, the APA report acknowledged that state hospitals historically served large populations of non-psychiatric patients—and then completely ignored that fact in its own psychiatric bed-number calculations and comparisons. The true state hospital bed numbers are clearly presented in Lutterman’s calculations and discussions—but appear in none of his more visually prominent bed-number comparison tables. Though all four reports emphasized the immense growth and central importance of community residential psychiatric beds in the continuum of care, none of the reports included any attempts to estimate and add in their numbers. Treatment Advocacy Center itself was a co-author and centrally involved in a related 2017 NASMHPD report that drew on Lutterman’s numbers; nevertheless, TAC has not revised its own issue briefings or reports about bed declines that include only the misleading numbers about state hospitals.

Nevertheless, the real data exists, and reveals a very different reality from the dominant narrative.

Overall expenditures (including public and private insurers) on mental health in America increased from $32 billion in 1986 to $186 billion in 2014. Even adjusted for inflation, that’s approaching a tripling in funding. (And it doesn’t include substance use treatment beds and services, which also ballooned.) Compared to the 1955 budget of about $364 million for the psychiatric patients in all state and county hospitals, the increases are even more staggering: By 2014, America’s population had doubled while its inflation-adjusted spending on mental health services had gone up 58 times.

In tandem, where comprehensive bed numbers can be found, there are up to two times or more psychiatric beds per person as existed in the 1950s—and most of these beds can or do involve coercive care.

Involuntary psychiatric detentions in inpatient facilities have been rising dramatically. For example, even with only partial data since 2010, UCLA researchers recently found per-capita detention rates across 22 states rising at three times population growth. At 357 per 100,000 people, the U.S. detention rate is double, triple, or many more times the rates documented in the U.K. and comparable Western European countries. Where older data can be found, such as in Florida, these upward trends have been going on for decades.

Meanwhile, many community beds are linked to ACT or similar case-management teams. As I examine in my book, even when they’re not administering forced drugging through court-ordered guardianships or Assisted Outpatient Treatment, surveys show ACT teams still tend to be highly coercive, frequently pressuring clients to take psychotropics and getting them kicked out of housing or involuntarily hospitalized if they don’t comply. In California, for example, a study found that the majority of FSP clients must comply with treatments in exchange for either the supports or housing or both, and a report to the state legislature predicted that California’s new coercive CARE Courts will dramatically increase the number of people in FSPs. Research in other states has also shown that the majority of people accessing voluntary outpatient services have experienced threats to remain treatment-compliant or risk losing their housing, income, or other supports.

It appears that there’s a “shortage” of psychiatric beds and involuntary treatment in the same way some people argue that there’s a shortage of prison beds in the world’s most carceral nation. A more reasonable descriptor might be “overloaded.”

Every year, ever more people are being channeled, voluntarily and involuntarily, towards psychiatric diagnoses and interventions. Today, more than 8 million Americans are receiving some level of care in America’s public mental health systems—colossally dwarfing the numbers getting public mental health care in the 1950s. Yet the numbers keep rising. Evidently, many of these patients are not improving—or may be worsening, as mounting evidence suggests, from long-term iatrogenic impacts from treatments—and are then not able, or not allowed, to leave their psychiatric beds behind.

Arguably, many of these people would be better served with more affordable housing, higher social security payments, social supports without psychiatric coercion, less aggressive nuisance-policing, improved work conditions and opportunities, different approaches in schools and foster care to distress and disruption, helplines that don’t initiate involuntary psychiatric hospitalizations, and equity and justice advances in society. Instead, the mental health system is being pressed to “solve” the impacts of innumerable social problems far outside its capacity—and further increasing the reach, frequency, and intensity of psychiatric cajoling and force appears to be the primary tool in the toolbox.

Ultimately, rather than the common characterization of a desperately underfunded, threadbare mental health care system that’s been shrinking since the 1950s and where practically no one gets subjected to involuntary treatment anymore, in fact, America has massive, expanding systems of psychiatric coercion threading their way throughout its communities and institutions.

Even in the APA publication Psychiatric News, psychiatric historian Jeffrey Geller similarly described so-called “deinstitutionalization” as instead a nearly all-pervading “transinstitutionalization” from asylums to a plethora of smaller psychiatric-carceral facilities and coercive community beds and services. Among people labeled with serious mental illnesses today, wrote Geller, the only ones “who may be totally unfettered” from psychiatric coercion are “the homeless.”

In similar recognition of this reality, after extensive consultations with persons with disabilities, the 2022 “Guidelines on Deinstitutionalization” from the United Nations Convention on the Rights of Persons with Disabilities declared that, “Housing should be neither under the control of the mental health system… nor conditioned on the acceptance of medical treatment or specific support services.”

Moving ahead, then, let us at least accurately describe what has been happening: America’s mental health system has never had more funding, more psychiatric beds, or more coercive treatment—and to the extent the system is failing, THAT is the approach that is failing.

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

***

Appendix: Sources for Estimated Numbers of Other Types of Beds

Below are explanations and reference links examining estimates of the numbers of beds in some of the other main types of inpatient and community residential psychiatric beds that were left uncounted in the NASMHPD, SAMHSA, and APA reports.

Child and youth inpatient and residential beds

NASMHPD report author Ted Lutterman’s count included about 42,000 children and youth he found in inpatient psychiatric facilities on a single day in 2018; however, he described and confirmed to me in discussion that many other child and youth psychiatric beds likely exist outside common tracking systems—including in the so-called “troubled teen industry” and out-of-state institutional foster-care settings. Indeed, in an estimate still widely cited today, a 2008 Government Accountability Office (GAO) investigation found 200,000 children and youth in such inpatient-like residential psychiatric institutions receiving federal support, plus an “unknown number” placed “by parents or others” in psychiatric facilities that were often doubling as boarding schools, academies, or boot camps. Because these are residential settings, stays are typically for long periods—so if there were in fact 158,000 or more missed patients in Lutterman’s count, the number of missed beds might be equal to that or more.

Scatter beds

About 80 percent of general hospitals—over 4,000 hospitals—do not have specialized psychiatric wards, but do have “scatter beds” for psychiatric care. These are general beds that sometimes get used for psychiatric care. No one tracks these, but a 2010 study cited by Lutterman estimated a significant 6 percent of all general hospital psychiatric patients stay in these beds—by 2014, that would have been about 121,000 people yearly. Some older studies put the estimate five times higher.

Other nursing home beds

The numbers of nursing home beds holding people diagnosed with depression or anxiety disorders is between 616,000 and 988,000 (there are probably people labeled with both disorders). Lutterman excluded these people because many likely have dementia or serious physical debilitation—yet there’s no data on what percentage are primarily psychiatric patients, though such patients are frequently placed in nursing homes. Given the large numbers, even a small percentage could be a significant number of additional beds.

Emergency room beds

A reported 70-80 percent of hospitals “board” psychiatric patients in their emergency rooms for hours, days, weeks, or even months at a time. The practice has been growing and, in a 2015 study using 2008 data, 1.7 million psychiatric patients annually were boarded in emergency rooms. Many such patients get subjected to forced psychiatric interventions.

Psychiatric beds in prisons and jails

Lutterman noted that many prisons and jails actually have inpatient psychiatric units, but the numbers are currently unknown. In effect, these are the equivalent of high-security state hospital beds that, from the 1950s until today, have been used for criminal/forensic psychiatric patients. On top of, or including those, there are the equivalent of publicly funded residential (albeit carceral) psychiatric beds. A 2016 lawsuit revealed that 32,000 prisoners were getting regular psychiatric treatment in California alone, both voluntarily and involuntarily, and a 2017 lawsuit firmly established a range of psychiatric services for them. Extrapolated nationally, this could be 288,000 beds.

The post Busting the Deinstitutionalization Myth: We Actually Have More Beds Than Ever Before appeared first on Mad In America.

In April 2023, compared to April 2022, calls answered increased by 52%, chats by 90%, and texts by 1022%. The trend was heralded by federal Health and Human Services Secretary Xavier Becerra to CNN: “Our nation’s transition to 988 moves us closer to better serving the crisis care needs of people across America. 988 is more than a number, it’s a message: we’re there for you.”

However, as previously reported by Mad in America, a percentage of people who contacted the former National Suicide Prevention Lifeline were subjected to geolocation tracing of their phone, computer, or mobile device. The Lifeline advertised itself as a place for confidential discussions about suicidal feelings but, according to its own policy, if a call-attendant believed a person might be at “imminent risk” of taking their own life in the next few hours, days, or week, the call-attendant was required to contact 911 or a Public Safety Answering Point to send out police and/or an ambulance to forcibly take the person to a psychiatric hospital.

Many Lifeline users described the experiences of betrayal, public exposure, police interactions, loss of freedoms, and forced psychiatric treatment as dangerous, harmful and traumatizing.

So, since the transition to 988, has anything changed? As contacts to 988 rise, how many people are getting forcibly subjected to these types of unexpected, unwanted interventions?

It appears detention numbers are climbing dramatically, too—even as VEH, SAMHSA, and many news outlets continue to obfuscate the facts publicly.

Contacts and Detentions Rising Together

For the ten-month period from July 2022 to April 2023, the new 988 Lifeline received more than 4 million total contacts—on pace to double the average 2.4 million calls annually to the Lifeline from 2017 to 2021.

The 988 metrics that are publicly shared, though, do not include any information about call tracing and involuntary interventions.

Replying in an email, Hannah Collins, the Director of Marketing and Communications for VEH, told Mad in America: “Still less than 2% of all contacts, for use of emergency services.”

SAMHSA spokesperson Dani Bennett gave the same approximation: “Based on the network call centers that collect and report this data, we estimate that fewer than 2% of 988 Lifeline calls require connection to emergency services like 911.”

Both VEH and SAMHSA refused to share any of the underlying data on which this 2% estimate was based.

It’s the same rate that VEH and SAMHSA have been publicly reporting for the Lifeline for several years. It’s also consistent with a 2018 internal Lifeline survey obtained by Mad in America through a freedom of information request—to this point in time the only actual data on the Lifeline’s involuntary interventions that’s been publicly released—which showed that on average 2% of total contacts, or 44,000 people, had been subjected to involuntary interventions over the previous year.

However, continuing at 2% means that detentions are climbing on pace with the rising number of contacts to 988. This means that, over the past ten months, a staggering 81,000 Americans who’ve reached out to 988 for confidential conversations have ended up being coercively taken to psychiatric hospitals. In 988’s first full year of operation, its call centers are on pace to incarcerate nearly 100,000 people.

Clarifying the Policies, Facts, and Obfuscations

Yet despite the rapidly expanding assault on many people’s basic civil rights, VEH and SAMHSA, aided by inaccurate reporting from major news outlets, continue to misrepresent what’s going on.

The 988 Suicide and Crisis Lifeline’s promotions still misleadingly reassure the public that all contacts are “confidential.”

And many news outlets falsely assert, as a Cosmopolitan article did, that “[I]f you aren’t in the middle of a suicide attempt while calling, you don’t need to be afraid of being hospitalized or having emergency services called on you.” This, though the Cosmopolitan article, inscrutably, also linked to a VEH policy document that specifically clarifies that Lifeline’s “imminent risk” policy applies to a much broader range of situations than an “imminent death” policy. VEH also produced an updated policy in December of 2022 that re-affirmed its practice of conducting “involuntary emergency service interventions” when a call-attendant feels that a person could be at “imminent risk” for suicide within an undetermined “short time frame” in the future.

Still, perhaps the Cosmopolitan journalist can be forgiven for being misled because, in explaining the 988 intervention policy, SAMHSA’s Bennett recently wrote even to Mad in America that “some safety and health issues may warrant a response from law enforcement and/or Emergency Medical Services (namely when a suicide attempt is in progress).”

Bennett added that a majority of the interventions “are done with the consent and cooperation of the caller”—a talking point from 988 leadership that’s repeated often, even by journalists raising concerns about the Lifeline’s involuntary interventions. It remains unclear what “consent” means, though, when some Lifeline call-attendants reportedly tell certain callers that police will come for them whether they voluntarily disclose their location or not. It seems likely that, as police shootings during wellness checks have gained notoriety in recent years, many people now quickly realize it’ll be much safer to be described to police as “cooperative” rather than as in dangerous emotional distress and uncooperative.

With similar smokescreening, a VICE article reassuringly reported that “a representative for SAMHSA told VICE, ‘988 does not currently use geolocation.’” It wasn’t clarified that 988 call-attendants simply contact 911 to do the geolocating for them.

And typical of most 988 news coverage, NPR and Kaiser Health News attempted to correct alleged social media alarmism and appease an irate psychiatrist by characterizing the likelihood of these unwanted interventions as “rare” and “remote.” The underlying disregard for the basic rights and freedoms of people who call mental health hotlines is striking—If the state was locking up 1 in every 50 journalists in America for purveying dangerous misinformation, or jailed 58,000 of America’s 2.9 million daily airline travelers as potential terrorists, would major news outlets blithely reassure their audiences that these unsettling occurrences were nevertheless “rare”?

In any case, the actual rate of the involuntary interventions is much higher than 2%. When asked by Mad in America, neither VEH nor SAMHSA provided data on the main reasons for calls since the transition to 988. But data previously obtained from the National Suicide Prevention Lifeline showed that only 20% of people typically called to discuss suicidal feelings—many people called to discuss other kinds of issues and problems or for referrals to community services. Calculating the rate of interventions on suicidal callers as a percentage of the “total contacts,” then, concealed a much more telling and alarming rate: Apparently, about 1 in 10 of callers with suicidal feelings were getting subjected to coercive interventions.

And since 988 has been heavily promoted as a broader mental health service, it seems likely that callers with suicidal feelings are a shrinking percentage of the “total contacts.” So, if callers with suicidal feelings now represent, say, 15% of total contacts, that would mean involuntary interventions are being imposed on 1 in every 7.5 people with suicidal feelings who call 988.

Both Promising and Concerning Developments

There are nevertheless some slightly promising new developments for 988 on the horizon—or at least, promises of promising developments.

According to its updated policy document, VEH has instituted a requirement that all involuntary emergency service interventions by 988 call centers must undergo a “supervisory review” in which the call-attendant and center supervisor document what, if anything, could have been done differently.

VEH also encourages call centers to “investigate alternatives” to sending out police and ambulances for imminent risk cases, and to “document strategies for outreach/education efforts to public/private entities to address this need” in their communities.

And in response to my queries about releasing more detailed data on involuntary interventions, VEH’s Collins’ replied, “We do not publish this data set yet, but work is underway to expand and improve the collection of this type of information so that we can publish with the other reports that we have made public.”

Yet there are some disturbing developments as well. As previously reported by Mad in America, members of the Lifeline’s own Lived Experience Committee had begun vehemently protesting the Lifeline’s policy of initiating unwanted interventions against people deemed to be at imminent risk, and had noted the lack of any scientific evidence that the practice saves lives or helps more than harms people. According to 988 Lifeline internal minutes from a March 2023 meeting obtained by Mad in America, VEH has disbanded the Lived Experience Committee and shut it down.

Overall, it’s astonishing that these 988 Suicide and Crisis Lifeline practices are not generating broader public concern. A wave of recent news stories in New York, California, and elsewhere around the nation allege that there’s a desperate “shortage of beds” for helping the most “severely mentally ill” and “outrageously dangerous” people. As I discuss in my book and in a recent Los Angeles Times article, such claims tend to be mired in poor science, prejudicial over-generalizations, and incorrect data on bed numbers and forced treatment rates. Regardless, what impact is it having to be filling those psychiatric inpatient beds with nearly 100,000 people annually who are doing nothing more “dangerous to self or others” than simply calling 988 to discuss their feelings?

Editor’s Note: The headline for this piece was edited. An increase from 44,000 to 100,000 is approximately 120%, not 220%.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Psychiatric Detentions Rise 120% in First Year of 988 appeared first on Mad In America.

Where are all of these people? Especially with the massive growth of social media helping give voice and space to those who were previously blocked out of centralized news media, why don’t we see these millions constantly speaking out and sharing their perspectives on involuntary commitment?

I recently completed Your Consent Is Not Required, a book that investigates people’s experiences of psychiatric detentions and the science, economics, and politics of forced treatment today. Yet, despite so many people being affected—many in ways that they felt were profoundly unjust, unhelpful, and traumatizing—I found that focused, sustained discussions of wide public reach don’t emerge much or trend often in social media. Compared with social media discussions of other civil rights issues currently in the news and affecting millions of Americans, like abortion, sexual harassment, or police violence, involuntary commitment is off the radar.

It’s not that no one ever talks about psychiatric detentions or forced treatment on social media; indeed, there’s been a noticeable uptick over the past few years. But even those people rarely use common, clearly identified terms or hashtags in their posts, pages, or groups that make them easy to find.

On Twitter, as well as on Instagram, TikTok, Facebook, Mastodon and other social media, hashtags often get used to highlight key terms or ideas, and then function as organizing tools—anyone who clicks on the hashtag can instantly connect to other posts and people anywhere discussing the same issue. This can help disparate people find each other and share stories, support, and research, build alliances, educate others, politically organize, and catch the attention of news media. The result can sometimes be extremely potent: #MeToo developed from a unifying hashtag into a social movement and then an indelible national political symbol. #BlackLivesMatter, too. But involuntary commitment doesn’t seem to have even a seed of such a hashtag. Consequently, on those occasions when forced treatment does hit mainstream news and then get discussed in social media, cohesive critiques remain difficult to find and rarely trend.

Why is this happening, and what can be done to change it?

I sought answers from a variety of people who are active in social media, public relations, education, or organizing, and who are also public critics of coercive psychiatry.

Coercion is Nowhere but Everywhere

Searching social media, it’s comparatively much easier to find busy discussions and debates about other issues in the general field of “critical psychiatry”—such as adverse effects of psychotropics, withdrawal problems, and pseudoscientific diagnoses—highlighted with hashtags like #PrescribedHarm, #Tapering, or #Antipsychiatry.

But Adele Framer has noticed the same tendency I have: The underlying themes of power and coercion are nevertheless practically everywhere.

Framer is best known as Altostrata on Twitter and as founder of SurvivingAntidepressants.org, a discussion forum about psychotropic tapering with 18,000 members. SurvivingAntidepressants.org has many topic subcategories with active discussions—but none about coercive treatment. Still, said Framer, “Individuals bring it up all the time.”

Essentially, she explained, while engaging in the forums or on social media, even people who’ve never been forcibly treated frequently express their humiliation, frustration, or anger about having been victims of “sales pitches” from doctors, media, family, and others that misled them with tales of alleged “biochemical imbalances” and corrective “safe and effective” psychotropics with virtually no serious adverse effects or potential withdrawal problems.

“Everyone gets together to persuade the reluctant patient to go on drugs,” said Framer. “It’s very seldom that people will say, ‘I knew what I was getting into.’ The coercion occurs in the doctor’s office. It’s the opposite of providing autonomy; it’s undermining or sabotaging the patient’s own independence and ability to make their own decisions.”

In that sense, people’s criticisms of coercion in psychiatry are frequently implied while discussing countless other mental health topics. Yet, by not focusing and centering discussion more explicitly on the role of coercion—and its ideological and practical connections to formalized forced treatment—countless opportunities are missed to more strongly emphasize this core issue in psychiatry, and critically discuss, educate, and organize in response to it.

At the same time, strikingly, even when involuntary commitment and forced treatment are the main topics at hand, they’re rarely clearly named as such.

For example, in December of 2022, when more aggressive uses of mental health laws against unhoused people in New York made national news, most critical discussions on social media seemed to use #Homelessness and policing-related hashtags like #CareNotCops or #HousingNotHandcuffs. The more targeted hashtags #NoToForcedHospitalization, #InvoluntaryCommitment and #HousingNotHospitals had only a handful of posts—and even fewer before December. #ForcedPsychiatry, #StopForcedPsychiatry, #ForcedTreatment, #Sectioned and #PsychiatricCoercion were also used only rarely or by very small numbers of people.

Similarly, the high-profile detention, control, and forced drugging cases of Britney Spears and Paris Hilton spawned massive discussion hubs. But again, the key popular hashtags #FreeBritney and #BreakingCodeSilence—the latter the name of an organization boosted by Hilton that represents survivors of the troubled teen industry—don’t clearly put at the forefront the general issues of involuntary commitment or forced treatment.

Meanwhile, any more directly explicit hashtags that could potentially be dominated by other users, frequently are. #Committed has been taken over by people testifying to their dedication to football, baseball, religion, and marriage. #InformedConsent is overrun with discussions of Covid-19, vaccines, and other medical issues. #Abolition shows that there are a lot of different things people want to abolish. Even discussions tagging California’s #FiftyOneFifty detention law are more cluttered with chatting about the Van Halen album.

Amid all this, it can start to seem like even the people who are publicly protesting against involuntary commitment in social media may not want to be easily identified as such.

Wary of Bigotry

Michael Simonson has talked with many people who, like him, at times feel reluctant to speak out about their own experiences of getting detained under mental health laws. “People are embarrassed to talk about it because, by definition, it means they were allegedly not just mentally ill, but dangerously mentally ill.” Many diagnostic labels alone, he added, already come with implied connotations that a person is purportedly less reliable or credible.

Simonson is a communications and public relations professional who occasionally does journalism for Mad in America and other outlets, and also experienced forced treatment. “Between the time I was committed and the time I started writing about it, that was a thirteen-year gap. Despite the fact that it was a traumatizing, life-altering event that shaped my life.” Even now, Simonson said, he feels “nervous” about the idea of using a hashtag that could more readily identify him as someone who has been committed.

Daniel Brummitt also believes that caution, wariness and fear are among the main reasons that psychiatric survivors, for their part, don’t speak out more against forced treatment.

Brummitt was first forcibly medicated as a child, but is now thirty-eight and has been off all psychotropics for fifteen years. Due in part to his diverse background in independent publishing, fashion, and the arts, Brummitt has nearly 30,000 followers on Twitter—as many as Mad in America has, and certainly a large number for a clearly self-identified survivor and activist against psychiatric force.

Brummitt’s personal account and another one he manages have been issuing posts with the hashtag #PsychiatricCoercion for years—yet very few others have joined in. The core problem, he told me, is that people who are pro-force often attack critics, and such attacks can be especially painful for those still struggling to recover from harms.

“They’re very scared to talk about things online,” said Brummitt. He said even some psychiatrists have become notorious in the social-media community for saying “really nasty things” to psychiatric survivors. “I’m very fortunate to not have any permanent damage. But I can definitely put myself in someone’s shoes who has been, and it’s horrible to be treated that way by a doctor. It’s like a surgeon messes your body up, and then laughs at you because your legs don’t work.”

Expressing one’s anger openly can cause other blowback, too. Brummitt once tweeted a framed picture of a generic building on fire with the Pfizer logo beside it. Police subpoenaed Twitter, and the FBI then visited him.

#ArtOfTheDay #ArtisticExpression pic.twitter.com/JbD5RcrLxC

— Anti-Mental Health (@mh_reform) November 11, 2021

For Jill Kesti, the fear of getting visited by authorities is still more ever-present.

Kesti has been in and out of involuntary treatment across two decades. “I’ve been very harmed. I’m on a lot of drugs, neurotoxins. And my physical body is falling apart,” she said.

Kesti manages a Facebook page, the Coalition to End Forced Psychiatric Drugging, that seems to be one of very few popular, open groups on Facebook targeted specifically at forced treatment. Kesti has created and posted thousands of images, memes, quotations, and links to articles and research that challenge common ways of thinking about psychiatric force and related social issues. She uses hashtags to link series of posts into de facto organized bodies of thematic commentary and research. Yet, even with 5,400 page likes and 5,800 followers, virtually no discussions occur on the page or below her posts.

“I get a lot of people texting me privately,” said Kesti. “But in general, people stay away… People are afraid to have their name out there on the page, with their history, with the horrible things that have happened to them.”

This privacy can be crucial for one’s sense of safety, said Kesti. “For somebody to speak out, they’re speaking out against the judge and against the lawyer and against the psychiatrist in the hospital that’s putting the orders out there, so it creates more of a fear of authority. There’s that fear that if you speak out, you’re going to be reprimanded, punished by being put back on a court order.”

Vesper Moore, an Indigenous activist, trainer, and psychiatric survivor, agreed. “There’s an inherent fear about talking about it, because you end up speaking out against public and private institutions.” Furthermore, Moore said, having been psychiatrically incarcerated carries a link in the public mind with violence or danger—so it can be risky, especially for people of color, to be associated with such an image.

It’s possible there could be “safety in numbers” if more survivors were regularly speaking out—especially if lots of diverse allies joined them—to help shift the public dialogue. However, others pointed out that feelings of embarrassment and a wariness of talking frankly about involuntary commitment occur also in health workers, critical practitioners, and across our culture. 

We Hide It From Ourselves

“A lot of psychiatric nurses would say, ‘I hate holding people down and injecting them.’” And though they’ll usually still do it, said Johnstone, “they have a tremendous amount of shame.”

Lucy Johnstone is a clinical psychologist, and one of a number of critical experts based in the UK with relatively large social media followings. Critical perspectives appear to be more prominent and accepted in the UK than in North America; nevertheless, Johnstone said she and others have been “massively attacked on Twitter” for simply challenging psychiatry’s diagnostic framework. Online debates have also led to seven formal complaints being lodged against Johnstone to her regulatory body. (All were dismissed.)

With regard to the relative lack of sustained, critical public discussions about involuntary commitment as a systemic practice—even in the wake of several damning TV documentaries last year about UK psychiatric hospitals—Johnstone compared the situation to how mainstream society tends to dehumanize or regard as “lesser” certain minority groups, prisoners, or refugees. A little dehumanizing can go a long way towards making it easier to ignore certain groups and the conditions into which they’re forced. “The public has bought into this narrative about crazy dangerous people who go around with axes killing people. So, I think there’s something rather dark and murky and unexplored about the whole idea of doing something that may not be justified.”

Indeed, Simonson said a major reason that he himself doesn’t write or tweet more about other people’s experiences of forced treatment is because our society has made it so difficult to explore this dark area. “It’s literally behind closed doors. It’s not just that people who are involuntarily treated are locked away, but medical records prevent you from accessing the data… It’s a battle to get into court hearings… It’s so blocked off.”

This darkness and dearth of data is something I repeatedly ran into during the research for Your Consent Is Not Required, and it’s also an issue that UCLA social welfare professor and author David Cohen has exposed through stalwart efforts to simply find out how many people nationally are getting psychiatrically detained.

In conversation, Cohen suggested that the lack of social media discussions mirror a similar lack of sustained research and discussion throughout the scientific and academic literature and our culture as a whole.

Since the death of psychiatrist-philosopher Thomas Szasz a decade ago—a scholar who made it his lifelong work to attack the principles and practices of forced psychiatric treatment—Cohen said no comparable, prominent intellectual has “taken the mantle” of constantly, doggedly, and deeply attacking the scientific, philosophical, and political underpinnings of involuntary treatment. “Szasz stayed with it. He never gave it up. Because it was his strong belief that it was like forced religious conversion; a crime against humanity,” said Cohen.

And Cohen believes the lack of sustained, thoughtful dialogue about force—even among many people who might readily critique other aspects of psychiatry, let alone among the broader public—is neither incidental nor accidental.

Cohen frequently describes coercion as a kind of conceptual sociopolitical glue for modern psychiatry and psychiatric practices. That is, using psychiatric force against people cannot truly be justified by contemporary science or Western ethical principles. However, Cohen argues, the widespread shoddy science and dubious, harmful treatments can be criticized until the cows come home, but are ultimately still held together and socially accepted mainly because they justify using force against certain, non-criminal types of people—a power society generally wants to reserve for itself.

“The desire to coerce others makes the theories of psychiatric science acceptable, even though the theories are so full of holes that they can’t be accepted,” said Cohen. “It gives everything the sense that we can trust psychiatrists to do this thing which is otherwise distasteful to our democratic norms, our rules of law, our sanctity of the individual, and our respect for privacy.”

And maintaining this illusion requires that society never look too closely or discuss too thoughtfully, said Cohen, but instead to obfuscate reality with the kind of “bigotry and ignorance” against “the dangerous mentally ill” that Johnstone also described.

Can this systemic, culture-wide darkness be brought more into the light? And if so, what role can social media play?

The Good that Can Be Done—and How

As Maggie Leppert shows, focused and sustained social media discussions of force can, at the very least, start to bring survivors and other critics of involuntary commitment together.

The twenty-five-year-old Leppert, The Booksmart Bimbo on Instagram, puts out a stream of visual memes, brief satirical videos, and critical stories about psychiatry and her experiences of coercive treatment and withdrawal from psychotropics. Over the past year, she’s gathered 4,300 followers.

Leppert said that, among many in her generation, there’s a “woke-ification” associated with psychiatry where treatments are seen as inherently virtuous. “There’s a lot of this attitude that, if you don’t go to therapy, if you don’t take medication, then you’re stigmatizing therapy, and that’s irresponsible, and you’re going to hurt other people,” said Leppert.

In spite of that—or because of it—right from the start, Leppert received many public comments and private messages such as, “You made me feel like I wasn’t alone,” “I didn’t know that I was right to feel like I was mistreated,” and “I don’t feel safe sharing my story publicly, but I want to share it with you.”

“That transformed the way I took the page,” said Leppert. “Instead of mostly educational, it became more of a place for validation. I really wanted to make it a safe space where people could feel their experiences were reflected and respected.”

She believes her efforts have been helped by Instagram’s algorithm, as it tends to connect like-minded people. “You could call it an echo chamber, but I don’t really think it’s that. I think it’s circling within spaces of people who are open to hearing these kinds of conversations.”

 

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A post shared by Maggie, The Booksmart Bimbo (@thebooksmartbimbo)

In a Washington Post op-ed, Sara Kenigsberg described how her experience of involuntary treatment “torments” her still, but then hopefully compared our current cultural situation to the beginnings of the #MeToo movement. She wrote, “I want those who have stories similar to mine to speak—so long as they’re willing and able… I hope by coming forward, I make clear that not just my voice, but all our voices deserve to be heard, our trauma recognized, and our insight taken seriously.”

Kenigsberg is a media producer with 32,000 Twitter followers. She has worked on nationally prominent advocacy and political campaigns and is now also a board member of the Bazelon Center for Mental Health Law.

“If we had #InvoluntaryCommitment trending on Twitter, that would be great,” said Kenigsberg. But for any unifying, galvanizing phrases and hashtags to emerge, Kenigsberg noted that it helps enormously to have established, influential groups regularly promoting them. “You need an organizer. If you look at #BlackLivesMatter, you had people that were organizing a movement.”

Currently, though, it seems that the relatively small number of groups and organizations that strongly and clearly critique the culture of psychiatric force do not tend to have busy or large social media presences, while larger ones—such as Human Rights Watch or some state Disability Rights network organizations—do not focus on the issue very sharply or very often.

Kenigsberg also suggested that educators and activists using social media could more regularly connect the issue of involuntary commitment with broader disability rights and human rights groups and hashtags, with movements for criminal justice and police reform, and in conversations about bodily autonomy. And she encouraged adding hashtags that promote clear ideas for change, such as #HomesNotHospitals or #CareNotCoercion.

I wrote a story published in @washingtonpost today. “The stigma of what I went through torments me, but it’s hard to stay silent as people, including our president, tie mental illness to mass shootings — and call for others to endure what I went through.” https://t.co/1G0ynSSu0R

— Sara Pearl (@skenigsberg) August 7, 2019

Vesper Moore similarly noted that, for example, #MentalWellness gets billions of hits on some social media, while #PsychSurvivor more typically gets a few thousand. By posting something that uses both hashtags, one can “subvert” the conventional discussions of mental wellness. And many diagnostic labels have been turned into enormously popular hashtags where people embrace “self-diagnosing” as “liberatory practice,” said Moore. Those same hashtags can be used to reach and educate. “They don’t understand the history of psych labels, and some of the harms that have come up—how these labels have destroyed lives and institutionalized people en masse.”

Another key factor to be navigated, though, said Moore, is how critics of the dominant mental health system take many different positions using different terms on practically every major issue, not only on involuntary commitment—such as reform, abolition, recovery with or without medications, mad pride, antipsychiatry, or viewing hospitals as places of care versus incarceration, etc. “I actually think it’s liberatory, in the way where we find language for ourselves. I think of madness as a way of subverting and defying the norms of mental health and what we understand as mental health in our society.” Unfortunately, Moore conceded, this “polyphony” of voices makes establishing universally used hashtags challenging.

In any case, such hashtags could definitely help survivors, educators, researchers, organizers, activists, and reporters alike find each other—along with others of like mind, and those looking to learn. Everyone I interviewed expressed excitement about the prospect of creating some shared hashtags for involuntary commitment.

“I’m grateful for you for doing this article and bringing it to the fore,” said Kesti. “I believe in hashtags. I believe in the power of technology.”

Framer pointed to how SurvivingAntidepressants.org and similar online groups focused on psychotropic withdrawal have now also inspired more than half a dozen scientific studies and papers and been included in numerous news stories. “Patients are educating each other with the assistance of social media. Patients are taking the initiative to challenge the medical paradigm,” she said.

A more robust social media presence for people and organizations questioning and challenging psychiatric force would seem especially important now, in a cultural climate of increasing authoritarian attitudes, and in which the uses of coercive hospitalizations and drugging are rapidly expanding, not only for policing the streets but for managing disruption, protest, and distress in schools, long-term care facilities, prisons, workplaces and elsewhere.

Of course, creating popular, influential hashtags on social media requires a community of participants acting together to collectively build and maintain. Can talking about it spark change? For his part, Brummitt doesn’t believe it would take a lot to get something good going. “If you have a small army of one hundred people pushing the same hashtag over and over again, it’s going to create a shift in public perception.”

***

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Why Isn’t There a Popular Hashtag for Involuntary Commitment? appeared first on Mad In America.

What’s the reason for this stunning abrogation of one of the few and arguably most important rights that ordinary, law-abiding, civilly committed mental health patients have? According to an internal review done for the Wisconsin Court of Appeals, between 2018 and 2020 Wisconsin courts apparently never got around to holding those appeals.

The report didn’t explain the reasons in detail, nor say for how many years it’s been going on, but it acknowledged that the problem was rarely or never the fault of the patients. Rather, it appeared related to the fact that, at that time, Wisconsin was paying public defenders a meager $40 an hour, the lowest rate in the nation, and so it sometimes takes months for a public defender to be found and appointed. Next, it usually takes months more for obtaining transcripts, for the state’s attorney to respond, to get a court date, and so forth. Consequently, when the court date for the appeal of the commitment finally arrives, more than six months will have already gone by, and the case will be declared “moot” and summarily thrown out. Every single time.

However, as Wisconsin attorney Elizabeth Rich told Mad in America, this didn’t mean that patients would be freed at any time during this process, when it was impossible to appeal an initial commitment order. At the end of the six months, many patients would be put on new recommitment orders—and would have to launch a whole new appeal from square one.

This is just one of many systemic assaults on psychiatric patients’ rights in Wisconsin that Rich has been fighting against—and in some cases successfully changing. It’s a fight that Rich has made her own, in large part inspired by the death of her son, Andrew.

Carers Demoralized and Disinterested

Elizabeth Rich cannot forget the night in 2017 that Andrew’s journey—and her own—into Wisconsin’s civil commitment system began. “I was visiting friends in North Carolina, and I got a call from police in the middle of the night,” Rich recounted. “I was just beside myself with worry for my son.”

Freelance journalist Michael Simonson previously wrote in depth about Andrew Rich’s story for Mad in America, in which a questionable wellness-check call to 911 by a stranger and dubious police reporting ultimately led to Andrew getting forcibly drugged with antipsychotics for two-and-a-half years. It was a traumatizing experience that eventually resulted in the twenty-nine-year-old killing himself.

Andrew’s slow demise over those years coincided with his mother Elizabeth’s gradual awakening.

With a background in business and corporate law, Elizabeth Rich knew little about Wisconsin’s mental health system when her son was first committed. During the initial days and weeks after Andrew’s arrest by police and detention in hospital, she assumed everything would work out for the best. “I just totally trusted in the system to do the right thing for him to get help,” she said.

However, as the weeks turned into months and years, Rich became increasingly concerned about the myriad of disturbing things she was observing in the hospital, in the psychiatric professionals, in the courts, and in Andrew’s condition. “There was this whole world that I didn’t know anything about,” Rich said.

The Winnebago Mental Health Institute where Andrew was initially detained was aging and run-down, and staff were frequently double-shifting. “Everybody seemed tired and overworked and annoyed.”

Sometimes patients were screaming, fighting back as they were muscled by security guards into four-point restraints on gurneys and had their pants pulled down to be forcibly injected. Andrew repeatedly complained to his mother—and to hospital staff—about what he viewed as the “inhumane” uses of seclusion and chemical and physical restraints against him and other patients. (Later, after a patient died, an investigation was launched that found the hospital guilty of 48 violations of state law.)

The antipsychotic medications appeared to “chemically lobotomize” Andrew, Rich said, sapping any joy from his life. “I saw how miserable it was for him, and how it really didn’t seem like it was doing anything helpful.”

At the same time, she was appalled by the court hearings for Andrew’s successive recommitments to Assisted Outpatient Treatment—forced drugging at home.

Right away, she saw the same mix of disinterest and demoralization as she’d seen in the hospital. “Everybody’s kind of worn out. The judges, lawyers on both sides … Everybody’s just kind of going through the motions. The hearings were clearly just a rubber stamp. Everybody knew what the outcome was going to be before anyone walked in the room.”

She saw no meaningful cross-examinations, no challenging of evidence—nothing that was common in ordinary courtrooms. At each recommitment hearing, a psychiatrist who saw Andrew for barely a few minutes every few months would simply re-describe the events that had led to Andrew’s original hospitalization in 2017—a story which, by this time, Rich believed had been extensively falsified by police, as Andrew had long asserted. (All police camera recordings of the apprehension disappeared.) Yet, this return to the story of his first hospitalization was enough to get Andrew repeatedly recommitted.

“As an attorney, what concerned me was, the hearings seemed very unjust,” said Rich. “I saw a lot of civil liberties issues. I saw systemic constitutional deficiency both in the way the system was set up, and in the way it was operating.”

Rich started studying mental health law and, even before Andrew’s death, decided to dedicate herself to representing people at civil commitment hearings. Since then, Rich has founded a nonprofit, Andrew’s V.O.I.C.E: Victory Over Involuntary Commitment Excesses, and represented about 80 clients in commitment cases. She has continued to be troubled by the routine civil rights abuses she witnesses on a daily basis, which she regularly challenges.

Questionable Experts

Many public defenders work hard for their clients facing civil commitment, Rich said. However, many others—perhaps, she suspects, in part due to biases and prejudices about “the mentally ill”—encourage their own clients to forgo juries or even hearings altogether, persuading them that they cannot possibly win and that fighting for their rights will only backfire.

As for the psychiatrists, who serve as “experts” in the hearing, they routinely downplay adverse effects of the drugs they’re prescribing, while most judges give “excessive deference to medical opinions,” Rich said.

Some judges even express impatience when a commitment hearing goes on for more than half an hour. “If all you need is a doctor’s opinion, then there’s no point in having a hearing,” Rich said. To help challenge physician opinions, Rich has begun regularly bringing in print-outs of the official US Food and Drug Administration-approved drug labels that list common adverse effects.

Meanwhile, in Rich’s opinion, the evidence used to justify commitments is rarely anywhere near legally sufficient, and is often steeped in bigotry against people labeled with mental disorders. “It’s very common for the doctors to testify in a demeaning and belittling way about the people who are the subject of the commitment.”

In one case, a psychiatrist remarked with scorn that Rich’s client claimed to have “a genius-level IQ,” as if this proved the man was delusional and grandiose. On cross-examination, Rich pointed out that her client had an engineering degree. “You don’t have any evidence that he doesn’t have an IQ in that range, do you?” she asked.

Another client of Rich’s was a fifty-year-old Catholic, celibate woman—yet she was described by the psychiatrist as perilously “hypersexual.” Rich searched through the medical records for the original source of this characterization and found that a case worker had once noted that the woman had had two lovers simultaneously—while in college in her twenties. “The stuff that passes for proof in these cases is just ridiculous,” Rich said.

Who or What Isn’t Dangerous

One of the most egregious and frequent abuses Rich sees is the watering down of what qualifies as “dangerous” behavior that makes a person committable.

Decades ago, the US Supreme Court established that a person must be currently or very imminently physically dangerous in order to be committed and forcibly treated under mental health laws. Under Wisconsin law today, there are five listed, specific definitions of “dangerousness,” such as immediate threats of serious bodily harm, extremely poor self-care, or severely impaired judgment.

However, for years psychiatrists in Wisconsin have often described people as potentially dangerous, without specifying any of the five criteria or providing specific evidence relevant to these criteria. Many recommitments have been based on what Rich called the same “circular logic” that entrapped Andrew—psychiatrists vaguely argue that, if forced treatment were withdrawn, the person would likely become dangerous and committable in the future.

In such situations, Rich explained, it’s virtually impossible to defend anyone against forced treatment. How can a public defender investigate claims and defend a client without knowing specifics of the accusation and the evidence against the person?

When she has pressed psychiatrists, their rationales often seem extremely weak. In one case, she learned that her overly anxious client had simply turned off the water to the group home. “Right now, I’m doing a brief for a client who was wrapping up a package,” Rich said. “She says her dad was mocking her, and so she threw a half a roll of tape at him. Does that truly place him in reasonable fear of substantial bodily injury?”

Wisconsin public defender Jeremy Newman recently challenged a case where his client was recommitted for a year primarily because he’d quit his job and sought disability benefits. In 2020, the Wisconsin Supreme Court agreed with Newman, concluding that it was not sufficient simply to state that the man would likely become dangerous to himself in the future “if treatment were withdrawn.” Instead, the majority stated, Wisconsin civil commitment courts “are to make specific factual findings” related to the state’s statutory, listed dangerousness criteria.

“A lot of cases started getting dismissed,” Rich said. However, she’s seen the tide starting to turn again, in appeals where judges have decided that not specifying any statutory dangerousness criterion is simply a “harmless error” of no real import when people seem “obviously” dangerously crazy.

“I’m so opposed to that [line of argument],” Rich said. “I have a case on appeal where I’m raising it.” Her client had parked his car and, in temperatures only slightly above freezing, was inspired to spiritually “cleanse” himself by undressing and walking through downtown. He walked several blocks before police apprehended him. While this was obviously unusual behavior and possibly a “public indecency” misdemeanor, Rich said it falls far short of the “mentally ill and dangerous” standard.

“We have this narrow corridor of ‘normal,’ and we want everyone to be inside that and, if they’re not, then we want to fix them, and the only tool in the toolbox is forced medication. But there’s nothing dangerous about being naked. The evidence is clear he was not shivering, he did not have frostbite. He’s not hurting anybody, he’s not hurting himself. That’s not dangerous under any Wisconsin legal standard.”

Recognizing People’s Rights

Rich also recently represented one of the many civilly committed people whose appeal date in court arrived so late that his case was declared “moot” and thrown out. In February of 2022, Rich challenged that declaration before the Wisconsin Supreme Court, and won. In June, the Court held that the man’s appeal was not moot because certain consequences of the commitment persisted beyond the six-month period. The Court pointed to his possible lifetime ban from owning guns and his potentially having to subsequently repay to the state the financial costs of his own involuntary hospitalization.

The Court dismissed other concerns she’d raised, such as the long-lasting trauma and stigma of having been forcibly hospitalized. Nevertheless, Rich said she felt like she’d achieved “a great victory.” Although the Wisconsin Supreme Court did not actually mandate that appeals must happen more expeditiously, Rich has noticed a general uptick in how quickly people’s appeals are handled. “They’re cranking decisions out in just six or eight weeks. So they are addressing it.”

To some, all of this might seem like a lot of effort for relatively small wins against such draconian laws and practices. But alongside honoring the life and death of her son, Rich said she’s hoping that her work—and the work of other concerned Wisconsin attorneys with whom she’s been liaising—will have impacts in other ways as well.

One goal, she said, is to continue to educate and remind all lawyers and judges of their true legal and ethical responsibilities in civil commitment cases—to help raise the overall standards of professional practice.

Additionally, she has seen a lot of psychiatric patients, like Andrew, “just give up”—practically and emotionally—in the face of the unchecked powers of mental health authorities. “I want to empower the clients whom I think often feel unheard and unseen. I want to tell them: ‘You have a voice. You have rights. And there are people who care.’”

Through her own cases, blogging, and outreach to journalists and others, Rich hopes to educate the broader public about these many disturbing, yet common, aspects of civil commitment practices in Wisconsin and around the country. “I want to raise awareness among the general public that this world is out there because I think a lot of people don’t know. Are we okay with it?”

Elaborating on this last question, Rich described a recent jury selection process. She was interviewing about twenty potential jury candidates for a commitment hearing, many of whom were politically conservative. Rich asked the group, “How many of you think that it’s okay for the government to require people to be vaccinated against Covid-19?”

No one raised their hand.

Rich continued, “How many of you think it’s okay for the government to require people with cancer to have chemotherapy instead of alternative treatments?” No one raised their hand.

Rich then asked, “How many of you think it’s okay for the government to force someone diagnosed with mental illness to take psychotropic medications?” Again, none of the potential jury members raised their hand.

“I think people don’t know,” Rich concluded. “I think more people than not would be amazed to learn that we strap people down in four-point restraints and pull their pants down and stick a shot in them. I think people would be surprised by that.”

Editor’s Note: This piece has been updated to reflect that Wisconsin’s pay rate for public defenders has since been increased.

The post In Andrew’s Honor: Attorney Elizabeth Rich’s Fight Against Unjust Commitments appeared first on Mad In America.

However, much else that got said at last week’s Federal Communications Commission (FCC) “Forum on Geolocation for 988” was hyperbolic. Government and mental health professionals seemed to be doing a hard-sell to promote public acceptance that anyone calling, texting, or chatting through the new 988 crisis hotline number should be grateful to have their exact geolocation automatically exposed to within three meters. This, in turn, left many questions about government’s commitment to taking seriously the mounting public concerns about crisis lines that do covert call tracing and forced interventions—even as those concerns did finally emerge in several impassioned speeches that shook the direction of the forum.

An under-discussed national issue

Over the past two years, Mad in America has reported on a groundswell of voices arguing that call centers in the self-described “anonymous” and “confidential” National Suicide Prevention Lifeline (NSPL) covertly and unnecessarily trace far too many calls, resulting in unwanted police encounters and traumatizing detentions and forced treatment in psychiatric hospitals. These protests have included the NSPL’s own Lived Experience Committee. Nevertheless, the nonprofit Vibrant Emotional Health, in charge of the NSPL and the roll-out of 988, has been lobbying government for direct control over cutting-edge call-tracing and geolocation-tracking powers—though NSPL centers already simply have to call 911 to get such call tracing done.

The issue has so far gone largely unreported in major news media, though Slate recently covered the controversy, while a New York Times story on 988 never mentioned it. Yet it has wide national relevance: The NSPL had 3.6 million contacts in 2021, and that number is expected to increase dramatically with 988 implementation—and with it, the numbers of people whose calls will be traced. Federal funding for the NSPL has leapt tenfold, turning a single crisis line into a billion-dollar industry, and the grand vision of proponents is that 988 will become a first-line access point for all mental health services around the country.

So the call-tracing and forced interventions issue needs more public debate. Yet, through much of the carefully curated FCC forum it was difficult to discern that there was anything at all controversial under discussion.

We can’t survive without call tracing?

The forum began with a four-hour parade of high-ranking officials, including FCC commissioners, Health and Human Services Secretary Xavier Becerra, Substance Abuse and Mental Health Services Administration (SAMHSA) leaders, and representatives of crisis call centers and mental health organizations that work closely with the NSPL. They unanimously extolled the “need” to be able to instantly and precisely geolocate anyone contacting 988, because “seconds count” when working to “save lives” of people who are in the act of killing themselves.

FCC Commissioner Geoffrey Starks described “vulnerable people” with low income, unstable housing, and mental health challenges who might feel suicidal, and said, “lack of geolocation poses a grave threat for them.”

NSPL/988 director Draper similarly stated that call-tracing and precise geolocation were needed for “life-saving” purposes such as helping people who are “losing consciousness, and they’re going to die.”

Either way, nearly every day hundreds of Americans who contact the NSPL are getting unwanted visits from police or other mobile intervention teams—about 60,000 people in 2021.

Draper briefly described the “risk assessments” that lead to these forcible interventions. However, he didn’t mention well-documented, extremely high error rates—since few people call the NSPL during the act of killing themselves, it becomes anyone’s guess if, or when, someone who has called simply to talk about suicidal feelings might or might not actually kill themselves.

And Sandri Kramer from Didi Hirsch Mental Health Services in California, which runs one of the nation’s busiest centers by call volume, provided insights into who these people are: Over half of their center’s contacts are people under the age of 25 including many children, over half are people of color, and about 2/3 are women. Basically, these are people who are likely to already be experiencing oppression and vulnerability in other aspects of their lives and communities. Nevertheless, hours of the FCC forum went by without discussion of any possible problems with subjecting these people against their will to police visits and forced psychiatric interventions.

Then, finally, came the panel about “988 Consumer Considerations With Geolocation“—like an eruption.

How do those we’re “helping” feel about our “help”?

Keris Jän Myrick, co-director of the Mental Health Strategic Impact Initiative, said that she was “struck” by how leaders of the 988 initiative were making the “a priori assumption” that geolocation tracking “is a good thing.” Myrick said the issues are complex. “Many times—I have had this happen in my own life—we’re calling for help, and it ends up in harm, it ends up in handcuffs. And, for worse, for many people, it also ends up in death; not at their own hands, but at the hands of the response team.”

When people call crisis lines, Myrick added, racism and other institutional and systemic inequities mean that “not everybody gets the same response.” Myrick described one county in California near her home “where there were five deaths because of a mental health emergency response… and four of those five deaths were Black folks. And [Black people] make up in that particular locality less than 5 percent of the population.”

Shelby Rowe, director of the Suicide Prevention Resource Center, pointed out that 988 is not being implemented “in a political vacuum.” Therefore, the lack of confidentiality could well have different hazardous consequences in states with different laws and prevailing prejudices. “If you are a trans girl of color in certain states… Will that geolocation data be used to turn your parents into child protective services?”

Similarly, Madhuri Jha of the Kennedy-Satcher Center for Mental Health Equity described the risks to undocumented immigrants—without sanctuary clinics, by tracing their calls we likely consign them to indefinite detention in an immigration prison.

Psychologist David Jobes of the American Foundation for Suicide Prevention said that many people with suicidal feelings don’t need psychiatric hospitalization in the first place, so if we’re going to forcibly intervene then we need to create alternative places for those people besides hospitals. Too often crisis line staff and clinicians “are erring on the side of caution in hospitalizing people,” said Jobes, leading to “nightmare stories of people being boarded overnight, sometimes for days, even weeks in the emergency department. That is not therapeutic.”

In line with others, Hannah Wesolowski from the National Alliance on Mental Illness said, “NAMI strongly recommends that the FCC proceed with a recommendation in your 2021 Report to Congress to establish a multi-stakeholder advisory committee, with us experts tasked with developing detailed recommendations [on 988 geolocation].”

The FCC facilitator then pushed the forum on through its scheduled programming: The final two hours were intended to be spent ironing out technical solutions to implement geolocation tracking.

But something different happened.

Corporate technologists recognize the need is social

Senior representatives from AT&T, Verizon, Intrado, and T-Mobile reported that the technical hurdles to implementing 988 geolocation tracking were manageable. However, as their prepared speeches yielded to discussion, it became clear that they’d all been moved by what they’d heard from the “Consumer Considerations” panel. They no longer felt that acting quickly was wise.

This was given especially strong voice by Rosemary Leist, a policy and government affairs manager from T-Mobile. “After listening to everybody on the forum today,” said Leist, she now believed a “phased” and multi-faceted development approach for 988, over the course of years, made more sense. She said industry needed more time to develop appropriate policies and technical standards, call centers would need to adapt to rising call volumes, and communities should be building sufficient and appropriate support services for callers in distress. Installing mass-scale geolocation tracking immediately could prove counterproductive. “[S]omething this big and draconian, in my opinion, should be meticulously organized and planned for,” Leist said—then also expressed support for a multi-stakeholder working group.

Are the FCC, SAMHSA, and mental health professionals listening?

Feasible ideas for safeguards got raised at the forum, including less precise geolocating, transparent disclosure of call-tracing practices in all 988 marketing materials and directly to callers, fines or removal from the 988 network for improper storage or use of people’s personal data, and formal reviews of call-tracing practices with accountability mechanisms.

However, none of those possible compromises were raised by anyone other than the people on the consumer panel. And the forum organizers had noticeably not brought in any group with expertise on privacy issues. This, combined with the fact that the organizers corralled the critical voices into one panel instead of allowing such voices to participate throughout the day, inevitably raised questions of bias. This bias seems to reflect the “we know what’s best for you” attitude that permeates most of our mental health service systems. So, will the FCC even follow their own previous recommendation of establishing a multi-stakeholder committee to examine geolocation tracking concerns, or is the FCC already collaborating too closely with SAMHSA and Vibrant Emotional Health?

Meanwhile, how dangerous could automatic geolocating turn out to be? No one mentioned one of the most at-risk groups: Pregnant women. Already, many states have criminalized substance use during pregnancy, and more have, or are on the verge of, criminalizing abortion. In effect, then, if a pregnant woman who is using a substance or considering abortion calls 988, it would be the same as a caller seriously saying they were literally in the act of killing themselves or were about to kill someone else. If the call-center had already geolocated the woman to a state where substance use or abortion is criminalized, they’d have a legal “duty to report” and to send police to arrest the woman. Is that what leaders of the 988 initiative call “help”?

***

Editor’s Note: MindFreedom is hosting a discussion on this topic on Wednesday, June 1, at 6 p.m. eastern time. Rob Wipond, Keris Myrick, Karin Jervert, and Robert Whitaker will be the panelists for the discussion, which will be moderated by Ron Bassman.

The post Government Forum Reveals 988 Call Tracing Remains a Threat appeared first on Mad In America.

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.

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.

“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?”

The post Roll-out of 988 Threatens Anonymity of Crisis Hotlines appeared first on Mad In America.

Driving much of this is growing awareness that calling 911 for issues of emotional distress can lead to deadly police interventions. Yet under-reported and under-investigated is the fact that calls to the National Suicide Prevention Lifeline (NSPL)—which prominently advertises itself as “confidential”—are often covertly traced. Callers get subjected to police interventions and forced psychiatric hospitalizations. Police shootings occur. Many callers describe their experiences as terrifying and traumatizing, and say the betrayal has made them feel more isolated than ever. And if 988 is implemented as currently planned, insiders say, every independent crisis call center in America could soon feel pressured to join the NSPL and trace calls.

NSPL call-tracing has been practiced for years. But inquiring journalists are told it occurs only in “rare” situations of impending death, and are asked to avoid frightening people from seeking help. Complaints on social media, however, are increasingly visible. For example, below this therapist’s video promoting the Lifeline, amid many testimonials about positive conversations there erupts a never-ending stream of comments from people—including children—devastated after their calls were traced.

A Police Visit at Work

Most of the people who’ve been subjected to call-tracing requested anonymity for this story, usually for the same reasons they wanted anonymity when they called the National Suicide Prevention Lifeline in the first place. They were concerned about potential repercussions in their lives, families, and careers if they revealed their feelings—and their experiences after calling the Lifeline only intensified those concerns. In these cases, only the initial of their first name has been used.

One of these people was S., a mid-twenties, African-American veteran who works in commercial aircraft maintenance. Though he emphasized he’d never endanger anyone else, a lawyer has confirmed his future chances to get security clearances could be jeopardized by what happened.

When feeling stressed at work, S. sometimes called the Lifeline. “The negative emotions are less oppressive, like there’s a burden lifted that someone’s helping me share,” he says.

One day last year S. called during lunch—he says he wasn’t actively suicidal but was just “feeling pretty down.” After ten minutes, he cut the call short to get back to work. Twenty minutes later, police arrived at the hangar. They said they’d heard he was suicidal, took his access badge, and escorted him to an ambulance.

S. was stunned—he’d used his personal cell phone, and hadn’t shared his name, location, or type of work. He had no idea the Lifeline could trace calls. “It was really embarrassing and traumatizing,” says S. “All my coworkers and my lead and supervisor, they saw me get taken away.” Police are especially intimidating to him, he says, because growing up in New York he was frequently subjected to random stop-and-frisks, and as a 6-foot-3 black man, he imagines he can look dangerous.

S. was detained in what he describes as an “absolutely miserable” veteran’s hospital. He was only allowed to leave several hours later when his brother-in-law came to get him. S. was saddled with a $1,050 ambulance bill, and had to get clearance from another doctor to be allowed back to work. He wonders if these events played a role in his getting laid off three months later, ahead of people with less seniority.

“The hotline was the most reliable place for me to get help when I needed it, and now I feel I can’t trust that place anymore,” says S.

One Call Endangers Her Legal Career

A young white student with close-cropped hair and a calm, measured tone, H. had recently left an abusive relationship and moved to Ohio for law school in 2018. She was feeling isolated and self-doubting, but had no health insurance and couldn’t afford therapy. “I was just depressed and kind of wishing that I might just die,” she says. “I wanted to talk to another person and maybe be reassured a little.”

The Lifeline conversation was awkward. “I didn’t feel like she was really hearing me. She was kind of using canned responses.” Much later, H. learned the call-attendant was secretly ushering her through a suicide screening questionnaire.

The call-attendant asked, “If you were going to kill yourself, when would you do it? And how would you do it?” H. hadn’t thought seriously about it before, but suggested to the call-attendant that she’d likely overdose with pills. “I just kind of gave her the first answer that popped into my head. I thought it was kind of a weird thing for them to be asking me, because isn’t the goal to try to talk me out of committing suicide, instead of helping me make a plan?”

The call-attendant started suggesting H. go immediately to a psychiatric hospital, but H. said she had a class soon. The call-attendant wanted to send police out, but H. said that was unnecessary. The call-attendant replied, “The police can determine that.” Frightened, H. hung up.

Fifteen minutes later, police and an ambulance came. H. says she was “freaked out” and worried about her new neighbors seeing “this spectacle.” The police, she says, “had already made up their mind.”

H. was strapped to a stretcher. At the hospital, she was forced to strip completely with several people watching. She was put in a small room with nothing but a bed, and left for twelve hours with no explanation what was happening.

“I was terrified,” she says. A social worker came by for about five minutes. “He diagnosed me with bipolar disorder. I don’t know where he got that from. And he was trying to make it sound like I told them I had tried to overdose prior to calling the hotline. And I was saying, ‘No, that’s not what I said at all.’ And he told me that now I was lying.”

H. had no previous experience with psychiatric hospitalization, so didn’t know that everything she was being put through is disturbingly common—as Susan Stefan’s Emergency Department Treatment of the Psychiatric Patient shows.

H. had arrived at 8:30 p.m. and was too anxious to sleep all night. At 10 a.m., she says she was “brain dead” from exhaustion when she was run through various interviews and told she’d be detained for evaluation in the psychiatric unit.

She felt “panicked,” she says, but told herself, “Just try to act calm, don’t give them anything they can use against me.” The way she was being treated, she says, put her in a “criminal defense kind of mindset.”

H. was put in a room with someone violently detoxing, prescribed two psychiatric drugs, and reprimanded for skipping breakfasts and some of the group therapies. After 72 hours, she was told a court application would be made to keep her longer. “It has very serious career implications, because when something like that goes to court, you’re introducing it into the public record,” says H.

When applying for a license to practice law, she explains, anything hospital staff noted or said about her could make the state board of bar examiners question her “mental fitness.” It’s a common bar practice that’s increasingly criticized.

“I knew that I had to avoid going to court at all costs, and my only way to do that was to sign myself in voluntarily… There was fuck-all that was voluntary about this.”

Two weeks later, H. was discharged—with a hospital bill for $50,000. “It was more than my student loans!” says H. She negotiated it down to $20,000 and a ten-year payment plan.

H. says she’s considered complaining to the National Suicide Prevention Lifeline, “But at this point, I just don’t want any further contact with any of these people.”

Some Avoid Hospitalization, Some Don’t

When asked, many callers are genuinely perplexed about why their calls were traced, and suggest that the call-attendants were over-anxious themselves, over-eager to “help,” or just misunderstanding.

Peer-support worker Valerie Clark says they got a police visit after trying to persuade a local call-attendant to help expedite a therapy referral. Clark got into an argument, called the attendant “useless,” and hung up. When police came, Clark kept a “low tone” and presented as “solid and stable and credible,” and the police departed.

J., a PhD science student and transgender man of Middle Eastern heritage, knew about call-tracing but thought he was safe because he’d bought a disposable phone and, after his call to the Lifeline, removed the battery. Police found him anyway.

His voice shakes as he describes questioning the need for drugs, and a group of men at the hospital grabbing his 5 foot 8, 105-pound frame and holding him down for an injection. “I’m just crying… Please don’t touch me. Please don’t touch my body… One is pressing upon my forehead so hard that I think my glasses are going to break…”

J. was discharged a week later. “I was so traumatized that I dropped out of university,” he says, likening the experience to being raped. J. has been working on formal written complaints, but to get past the shame and humiliation, he says, “I have to pretend it wasn’t me, that it happened to someone else.”

Unreliable Science, Aggressive Policy

Delving into the policy, science, and call-data, it’s clear that such disagreements and misunderstandings between call-attendants and callers are not only possible, they’re probably very common.

The NSPL is managed by a nonprofit, Vibrant Emotional Health, under contract to the US Substance Abuse and Mental Health Services Administration (SAMHSA). John Draper directs the NSPL, Disaster Distress Helpline, Veteran’s Crisis Line, and other interlinked national hotlines. About 170 community crisis centers are members of the NSPL, and comply with Vibrant-NSPL policies. Calls to the NSPL’s various 800 lines get routed to the geographically closest member center, and other centers provide backup. Centers also take calls through their own local numbers. Call-attendants are often a mix of staff and volunteers.

The NSPL’s website and ads declare all calls to be “confidential,” and do not prominently disclose any limits to that.

Member centers vary in whether, how forthrightly, or how often they might disclose. The practice of forcibly intervening is described in NSPL policy and in a journal article co-authored by Draper.

A caller is identified as at “Imminent Risk” when the call-attendant believes that, in the relatively near future, the caller might take their own life. Actual “suicide attempts in progress” are just one, apparently rare, subcategory of Imminent Risk. To determine if other callers are at imminent risk, call-attendants secretly run callers through a risk-assessment questionnaire to determine if a caller has the desire, intention, and means to kill themselves. “Buffers” against suicide might also be considered, such as the presence of others in the home or the caller taking actions suggested by the call-attendant.

“Active rescue”—the euphemism for call-tracing and interventions by police and ambulance or mobile mental health crisis teams—is to be executed as a “last resort.” Yet interventions can also be triggered simply if a caller’s general mental-emotional state seemingly might lead to “harm to self or others,” and when third parties say someone they know might be at risk. Draper’s paper justifies intervening without caller knowledge or consent with a seeming doublethink premise: a) suicidal callers are not in a rational state of mind, yet b) suicidal callers rationally grant “implicit” consent to interventions simply by calling the hotline. The paper acknowledges “small but significant disagreement in the crisis center community” about this logic.

Certainly, US law gives broad latitude for breaches of confidentiality and forcible interventions that are intended to help others in danger. But how many people who call a suicide line to talk about suicidal feelings do not have any desire or intention to kill themselves nor access to any of the most common means such as pills, poisons, ropes, guns, jumps, and suffocation? So, with an average 10-minute call duration, is deciding who gets a police visit basically a crapshoot?

Yes—according to all the research, including the NSPL’s.

A 2017 meta-analysis found that expert ability to predict suicide barely beats random chance, and “has not improved across 50 years of research.” A 2018 review found that suicide risk-assessment methods all produce an “unacceptably high false positive rate.” A 2016 study of NSPL centers acknowledges that “an empirical foundation for warning signs of imminent suicide risk is lacking,” and the whole concept of Imminent Risk “is fraught with problems such as lack of clarity and imprecision.” SAMHSA-NSPL documents show a history of “inconsistent” assessments; one study of just four NSPL centers found that the number of times police were sent out ranged from 0.5% to 8.5% of calls.

So how many people is this actually happening to? And is there any way to protect against it happening?

A Well-Meaning Invasion of Privacy

Christopher Parsons, senior research associate at University of Toronto privacy-and-surveillance monitoring group Citizen Lab, had not heard of suicide-line call-tracing, but his explanation of how it’s likely done is confirmed by various sources, including a paper from the National Emergency Number Association, which NSPL representatives helped draft, and a Canadian telecommunications report.

With Caller ID and a landline, location can be found using widely available databases. With blocked Caller ID, mobile devices, and online chat, call-attendants contact 911 and get routed to a “Public Safety Answering Point” (PSAP) for “Enhanced-911” (E911)—usually police. Call-attendants give the exact call time, or the IP number. PSAP staff then obtain number, billing, and/or location information from telecommunications databases. They can also “triangulate” locations using cell towers, but most commonly today they covertly ping the GPS chip in mobile devices.

Can GPS-pinging be blocked? “This isn’t an operating system feature,” says Parsons. “This is baked right into the guts of the phone itself. It’s going to bypass the controls that you may have set in place.”

The GPS-pinging can work even if the mobile is turned off or main battery has recently died. This manufacturing standard was nobly intended—when we call 911, emergency responders can now quickly find us. However, Parsons says Canadian police have been evasive about other uses. The Electronic Frontier Foundation is fighting cases where US police tracked suspects without warrants.

Parsons says it’s concerning that there are few legal rules and no public transparency surrounding E911 usage. “Step one: I think that when novel policing technologies are being developed, or being deployed, or in use, there needs to be with it an explanation of the law and how that operates, as well as a mandatory reporting framework. That’s the institutional, bare minimum.”

Electronic Frontier Foundation’s Andrés Arrieta was also surprised, and similarly wants more transparency. “They should simplify and explain to people at the beginning what ‘confidential’ means,” says Arrieta. “And how many times a day do they query for the location data?… What was the reason? Was it reasonable? What was the result?”

SAMHSA and Vibrant/NSPL are anything but transparent.

Both refused to provide detailed statistics. I initiated a freedom of information request, and SAMHSA alternately ignored my requests for months, claimed they had nothing, or delivered trickles of general information.

SAMHSA finally handed over a survey:

The NSPL received 2.2 million calls in fiscal year 2017-18. Many call centers didn’t complete the survey or answer certain questions, but out of 1,020,142 calls, 21,055 callers were labeled as “Imminent Risk” and subjected to “Active Rescue.” Extrapolating that 1-in- 50 rate to all NSPL calls, that’s 44,000 callers who got visited by police that year. A percentage reportedly involved caller “collaboration”—but that includes callers who buckle to pressure.

This 2% rate is what the NSPL admits publicly. However, the number and rate of interventions appear to be much higher.

Mobile mental health crisis teams were sent to visit another 108,386 callers—teams that are often accompanied by police and may also forcibly hospitalize people.

The survey did not ask NSPL centers how often they dispatched police in response to calls coming in through their local numbers—that’s 8 million more calls and, assuming the same 2% average, 160,000 more police interventions annually.

Of course, there are likely many repeat callers and, notably, only about 20% of calls are suicide-related. So, the number of callers to NSPL centers who get police visits each year is in the hundreds of thousands, and the rate of forcible interventions on callers who specifically talk about suicidal feelings could plausibly be anywhere from 2 to 20 times higher than Vibrant/NSPL implies publicly.

What’s really going on? I stopped digging for more data when SAMHSA and the NSPL’s Draper promised me interviews—which they then didn’t give. Vibrant/NSPL media representative Frances Gonzalez also refused to answer any questions about Imminent Risk practices.

Meanwhile, in a promotional video, Draper actually criticizes how the mental health system forcibly intervenes on suicidal people, and repeatedly lauds how, conversely, the NSPL is all about “empowering” callers to make their own decisions about “what kind of care they want, how they want it, and when they want it.”

Callers in Danger, or Call-Attendants in Fear?

Some people who’ve taken the NSPL training or worked as call-attendants have publicly expressed concerns.

Megan Wildhood is a Seattle writer who identifies as autistic and has criticized NSPL training. In line with NSPL documents I obtained, Wildhood says the training was two half-days, with two hours devoted to making risk assessments using a question-and-answer “decision tree.”

“They tried to balance empathy with this standardized way of approaching callers who are experiencing some form of suicidal ideation,” says Wildhood. “It’s unnatural. It’s like chutes and ladders. How can you tune into another person? These questions are geared towards saving time.”

Wildhood asked about people who’d had terrible experiences after their calls were traced. The trainer replied, “We help more people than we hurt.”

Katie Tastrom is a sex worker and disabled writer and activist who worked at an NSPL crisis center for several months and wrote about how police interventions are more dangerous for people who are poor, minorities, disabled, or otherwise marginalized—people also more likely to rely on free support hotlines.

To Tastrom’s recollection, she never forced an intervention on anyone, but it was a daily occurrence in the center and she felt pressure to do it as part of her job. The numbers of interventions sometimes went up, and then there’d be discussions and trainings to bring the numbers down. “There’s definitely people who would call the police pretty quickly,” says Tastrom. “Some people just got really panicked; they felt like it would be their fault if the person killed themselves.”

Other fears and biases also came into play. “People with a specific mental health disability, people with quote unquote psychosis, things like that, definitely would be at risk of having the police called on them way more,” says Tastrom. “They’re seen as not being able to make decisions for themselves.”

Is There Something Wrong with Honesty?

Even if there might sometimes be understandable reasons to breach confidentiality, why not at least honestly disclose to callers that it could happen? In speaking with hotline operators, it becomes clear that, alongside their strongly-held beliefs about how to truly help people, their hotline’s popularity with callers and funders is at stake. And amid 988 implementation, the differences of opinion are approaching a political crisis point.

Crisis Services Canada is a similar network to the NSPL, and similarly wouldn’t discuss its call-tracing practices. However, Stacy Ashton, director of the Crisis Centre of British Columbia, says they send out police in response to about 2% of calls.

Ashton dislikes how “boilerplate” disclosures can “maintain that impression that suicide cannot be talked about.” Disclosure can also make some people unwilling to talk, she says, and harmfully isolate them further.

Of course, disclosure could also make some callers seek out other hotlines that don’t trace calls—possibly partially explaining the evasive secrecy of the NSPL and Crisis Services Canada and their member centers, who hinge their funding appeals on their popularity.

For her part, Ashton says that letting people potentially kill themselves or sending police and forcibly hospitalizing them are “two really undesirable alternatives” and “not a decision that any one of us wants to be locked into.” She describes the conundrum as “the definition of a system problem. When humans are doing the best they can with the tools they have, but the tools they have are not adequate.”

Ashton says high-profile US police shootings have had “ripple effects” in Canada. “The core assumptions of how we handle mental health crisis in our society is up for grabs. It’s an amazing opportunity to actually talk openly about it.”

She hopes to host consultations with diverse stakeholders to explore alternatives. One roadblock, Ashton says, are the crisis center accreditation standards of the American Association of Suicidology (AAS). “They don’t support a completely anonymous crisis line.”

Bart Andrews sits on executive committees of the AAS and the NSPL, and is Chief Clinical Officer at a Missouri NSPL crisis center. He supports call-tracing, and says people need to understand how much call-attendants struggle with feelings of “moral liability.”

“You’ve got to ask yourself, which problem do you want to deal with? The person being dead, or them being angry that the police come out to make sure they’re safe?” says Andrews. And families sometimes sue. “You’re not answering to the person you didn’t call the police on. If they end up dead, you’re answering to their loved ones.”

Nevertheless, Andrews acknowledges mounting research showing that psychiatric hospitalization seems to be extremely suicidogenic. “When suicide researchers talk about elevated risk, they’re talking about three times, four times, and sometimes ten times,” says Andrews. “When we talk about inpatient treatment, it’s exponentially larger.”

After being psychiatrically hospitalized and treated, people become dozens or even hundreds of times more likely to kill themselves—even if they were never suicidal before. But Andrews believes more studies are needed to understand what this evidence truly means. “The lack of data is troubling. We hospitalize people at risk of suicide, even though we don’t have any evidence that hospitalizing them is particularly helpful.”

His center’s call-attendants usually disclose the possibility of active interventions; Andrews believes this openness creates “an aggregate good.”

Psychiatrist Elia Abi-Jaoude elucidates this perspective well. Abi-Jaoude lectures and writes critically on misrepresentation and deception in psychiatry, and also works with suicidal adolescents at a Toronto hospital. He feels honesty and disclosure help build therapeutic alliance.

“I disclose limits to confidentiality upfront routinely,” he says. Some youth might become more careful in how they speak, says Abi-Jaoude, but it mitigates against the betrayal they could feel if he does at some point feel compelled to detain them. “I think it gives them some agency, and engages them in a more collaborative way. The goal is to maintain honesty and trust, now and into the future.”

For the same reasons, Abi-Jaoude believes the impacts of call-tracing should be studied and openly discussed. “We should find ways to acknowledge, validate, and support these people who say they feel betrayed and traumatized. They should be interviewed and their experiences learned from. What happened? How come there was this miscalculation? How can we learn from this?”

Considering such perspectives, I ask Andrews: Why doesn’t AAS change its policy?

“Should all crisis centers that are accredited by AAS have a disclosure that, in fact, the police could be called?” Andrews repeats back. After a pause, he says, “It’s a fair question… That’s something that AAS as an agency needs to discuss and get input on.”

But Draper’s paper hints at backroom politicking heading in the opposite direction: “While two [New York] Samaritans centers in the network had historically resisted active rescue on philosophical grounds, they too agreed to adopt the Lifeline [Imminent Risk] Policy,” the paper states, explaining that Samaritans finally understood “compelling research.”

Samaritans characterize what happened differently. And they warn that the Vibrant/NSPL mission could ultimately reshape how all crisis lines across America operate.

A National Threat to Confidentiality

The New York Samaritans advertise that their hotline is “completely confidential” and, “unlike some other hotline services,” they never conduct “any form of call-tracing.”

Director Alan Ross says he understands the motives of call-tracing, but some people want absolute anonymity no matter what. “You need diverse forms of access to reach the majority of people. And the greatest gap is confidentiality. People are hesitant to seek help, because they’re scared. They don’t want people to know their business, or they’re ashamed.”

Ross points to a person questioning their sexuality or gender, an illegal immigrant, a politician, a parent in a custody battle, and many others who might be seeking help in sensitive circumstances. “I can come up with one hundred reasons why you wouldn’t want to take a chance of someone being able to identify you.”

But many Samaritans crisis lines have moved away from protecting people’s privacy and autonomy. “In New York City, we’re the dinosaur,” says Ross. “We’re the last bastion of what were the original practices and principles.”

Ross was a formal adviser to the NSPL’s development 20 years ago. He says it was a diverse collection of community-based centers collaborating to create round-the-clock support—call-tracing wasn’t required. Several years in, though, the Mental Health Association of New York, now Vibrant Emotional Health, won the SAMHSA bid to assume control of the NSPL.

At the same time, there was an expanding psychiatric-industry movement to recast suicidal feelings as symptoms of mental illnesses requiring treatment. SAMHSA, the American Association of Suicidology, and Vibrant/NSPL began to push call-tracing and hospitalization.

While the NSPL today includes 170 centers, Ross estimates there are 600 other hotlines serving communities around America, many of which don’t trace calls. Yet when the federal hotline legislation is implemented, all 988 calls—and the associated state tax funding built into the legislation—are slated to go solely to NSPL centers.

“But there are advocates in the public health community who believe that all hotlines should be included,” says Ross. “This is one of the things that sticks in the craw of those of us who run independent community hotlines. The NSPL gets all the marketing, all the promotion, all the funding. And now that they’ve created this three-digit number, it appears that things will only get worse; the NSPL could have a perfect monopoly.”

“It’s frustrating,” Ross adds. “The people who are running the national hotline have not, and you can quote me on this, have not gone, ‘How can we engage and support the hundreds of hotlines that are operating in communities around the country?’ Their focus is solidifying their network, their funding, and public policy around it.”

Indeed, during federal 988 hearings, forcible interventions on callers were promoted as “life-saving,” while Vibrant/NSPL, SAMHSA, and AAS apparently never told legislators about the scientific unreliability of risk assessments, large numbers of callers whose lives have been upended after their calls were traced, or how hospitalizations and treatments may be making people more suicidal rather than less so.

So why have any Samaritans gone along?

Ron White, Chief Program Officer for Boston Samaritans, says his center originally joined the NSPL to be part of national research, best practices development, and funding access. Their center didn’t trace calls. But around 2012, says White, “The NSPL finally, kind of, if you will, drew a line in the sand that said, ‘if you want to be a member of this network, you need to adopt our intervention policies.’”

Boston Samaritans now disclose the policy on their website. They disclose directly to some callers, too, particularly if they ask about call-tracing—which regularly happens, says White.

Does he believe 988 implementation could put more pressure on other independent crisis lines around the country to join the NSPL and, if they don’t currently, start tracing calls? “The more people are aware of 988, the less likely they are to call non-Lifeline centers,” says White. “And if 988 comes with funding, I think these small nonprofit centers are going to take a hard look at that.”

Building Relationships Instead of Tracing Calls

After researching Rational Suicide, Irrational Laws, lawyer Susan Stefan calls it “unforgivable” that some suicide lines don’t disclose that they trace calls. “It’s so traumatizing to be trustingly talking to somebody and all of a sudden have the cops show up.”

Many hotline operators express fears about legal liability, but Stefan says courts usually don’t consider the situation as similar to close doctor-patient relationships. She says her research suggested that to date it’s been “extraordinarily rare” for hotline volunteers or staff to be successfully sued for a caller’s suicide.

Stefan describes call-tracing as a “short-sighted” policy, especially since many people she interviewed said they’d never again feel safe calling. “Rather than ‘stop people from killing themselves,’ I think we need to rephrase the goal, and have it be ‘reduce people’s suffering and help them achieve a life they want to live.’”

Stefan points to an Air Force anti-suicide program that was ground-breakingly successful. The emphasis was less on intervening at the crisis point, and more on helping people with practical daily challenges and marital, financial, or other problems that might lead to suicidal feelings.

Stefan also praises Western Mass Recovery Learning Community’s “Alternatives to Suicide” trainings that help people become better at talking with each other, and its peer-run hotline that never traces calls.

Generally, peer-run hotlines appear to be less likely to have a policy of tracing calls—but RLC director Sera Davidow says even that is unfortunately not guaranteed. “In my experience, all that they accomplish [by tracing calls and forcibly hospitalizing people] is to continue to send this message that whatever you’re struggling with, the things that have happened to you, are so dark and so terrible that nobody can handle hearing about them.” By contrast, “The whole ‘Alternatives to Suicide’ approach is rooted in this idea that if we make the taboo topics okay to talk about, then people often don’t end up getting stuck in them.”

Davidow asks which route ultimately leads society to more loss: “Is it the path where everyone is so terrified to talk about suicide because of consequences, like having the cops called on you even by confidential hotlines? Or is it the path where we know that we’re going to lose people, and we create as much space as we possibly can to be with people in darkness and talk openly about this and support people?”

Indeed, the trend towards promoting the suicide line may simply be reinforcing our hyper-individualistic culture while downplaying our shared, worsening social-environmental circumstances that increase collective suicidality. Many suggest so, and Wildhood with particular pointedness. Wildhood says that, due to her autism, she’s had to teach herself how to build “connection,” and she now believes everyone could benefit from some re-learning.

“We are all so disconnected from the people actually in our lives that we feel safer talking to a stranger,” says Wildhood. “If you don’t want people to be alone, you show up.”

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More documents obtained from SAMHSA through freedom of information processes are available for downloading on Rob Wipond’s website.

For updates to this story, see:
Roll-out of 988 Threatens Anonymity of Crisis Hotlines
Government Forum Reveals 988 Call Tracing Remains a Threat
Psychiatric Detentions Rise 120% in First Year of 988

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MIA Reports are supported, in part, by a grant from the Open Society Foundations.

The post Suicide Hotlines Bill Themselves as Confidential—Even as Some Trace Your Call appeared first on Mad In America.

Part activism and part pragmatism, piloting what’s needed at larger scales to tackle climate change, projects include community gardens, reskilling, sharing of tools, space, and equipment, Transition Towns with Energy Descent Action Plans, community-supported agriculture, alternative currencies, and relocalized economies. Hundreds of Transition Town groups now exist in the US alone, and proliferating community resilience organizations like the nonprofit I volunteer with garner support from charitable funders, government agencies, and business associations.

But recently, another refrain has spread alongside—that climate changes, looming climate threats, and climate-related disasters cause “mental health problems” and “mental illnesses” requiring treatment. Fear, sadness, ecological grief, “eco-anxiety,” and PTSD intermingle with climate change, community resilience, and “treatment” in webinars, TED talks, major newspapers, and magazines covering psychiatry, nature, and urban life.

Mainstream mental health services are promoted as pillars of resilient communities in climate science journals and info-hubs for resilience leaders. A growing number of community resilience groups educate the public about climate change alongside trauma therapists or the Substance Abuse and Mental Health Services Administration, and channel people in distress toward treatments.

I’ve watched this with deepening concern. Obviously, the possibility of globally apocalyptic climate change, let alone climate impacts already occurring, presents us with one of the most profound personal, social, economic, environmental, spiritual, and political challenges in modern history. But for that reason, isn’t it expected and important that many of us go through anxiety, sadness, despair, trauma, and other inner distress—feelings that, hopefully, will ultimately help transform us and bring us together to build a more environmentally sustainable society?

That is, isn’t inner distress likely a key precursor for more people to ultimately decide to take decisive actions, or become activists? Conversely, what happens if we instead label these potentially revolutionary feelings as pathologies, as brain disorders, as “mental health problems” and “mental illnesses” needing “treatment”?

Yet I’ve seen no visible debate occurring.

So I decided to investigate more and seek other perspectives, particularly from prominent critics of our mainstream mental health system, including a renowned pioneer of community engagement.

Three key warnings emerged. First, mainstream, conventional mental health ideas and approaches pathologize and medicalize people’s negative reactions to climate change, effectively depoliticizing those feelings. Second, these approaches suppress rather than encourage emotions, ideas, and behaviors that challenge or disrupt dominant cultural beliefs and norms. Third, they undermine the diversity, citizen empowerment, and mutual assistance essential for resilient communities.

Ultimately, mainstream mental health services move society closer not to environmental sustainability but to sedating burgeoning activists.

Community Resilience Meets Guild Public Relations

The meme interweaving climate change, community resilience, and mental health, I quickly discovered, didn’t just spontaneously spread. Health organizations have long expressed concerns about increasing disaster-caused injuries, heatstroke, vector-borne diseases, etc.

“Mental health problems” got added to the list after efforts from the professional guilds and pharmaceutical conglomerates that routinely expand markets for psychiatric and psychological treatments by pathologizing common feelings, labeling distraction as ADHD, anxiety as anxiety disorder, or slight sadness as mild depression. In 2017, the American Psychological Association teamed with resilience organization ecoAmerica to produce guidance on solving climate change impacts with community resilience and mental health services. The American Psychiatric Association (with its pharma funders) and a new Climate Psychiatry Alliance helped ensure similar messaging got included in the Pharma-backed Medical Society Consortium on Climate & Health, the international Lancet Countdown on Health and Climate Change, and the United Nations’ Sendai Framework for Disaster Risk Reduction.

It’s obvious why well-meaning mental health professionals embrace community resilience: Many people report “therapeutic” benefits from being more socially connected, contributing towards practical, positive changes, and becoming better prepared for climate crises. But conversely, how do the typical treatments provided by mainstream mental health services—psychiatric drugs and sometimes cognitive behavioral therapy—affect climate change or feelings about it?

All the papers and presentations trumpet that mental health professionals will help us survive and thrive—but none provide evidence. Typical is a report on the impacts of disasters co-produced by the Center for Public Integrity, Mother Jones, and Texas Tribune that calls for dramatic funding increases for mental health services while never asking if science supports it. A 2018 paper by public health specialist Katie Hayes and others, endorsed by the Climate Psychiatry Alliance as a “standard foundation” text, acknowledges that “there are research needs” where “the efficacy and accessibility of mental health interventions related to climate change are assessed.” Nevertheless, even this paper calls mental health services “catastrophically” underfunded for what’s coming.

The promotional rhetoric diverts attention from considering the risks of pathologizing reactions to climate change.

Pathologizing, Depoliticizing, and Disempowering

The pathologizing and medicalizing of feelings about climate change derails social activism, said David Cohen, a UCLA social-welfare professor and co-author of Mad Science: Psychiatric Coercion, Diagnosis, and Drugs. “The use of the expression ‘mental health’ is such a game-changer,” he said. “It’s so terrible.”

Scanning excerpts I sent him from Hayes’ paper, Cohen noted that “mental health” and “mental illness” were loose categories encompassing all possible states of mind. Simultaneously, “mental health problems” became a catch-all for climate-influenced distresses—loss, anxiety, agitation from wildfire smoke, depression and PTSD after floods, domestic violence from increasing poverty, and more.

Yet, Cohen said, health and illness are medical terms that bring along conventions from our medicalized mental health system.

The terms frame negative feelings in response to climate change as, in part, pathologies or illnesses inside individual brains that require psychiatric or psychological treatments rather than social-political solutions.

This medicalization then “enfeebles” us, said Cohen, making us feel dependent on “expert” mental health professionals to help manage these feelings.

So, while there are many different intellectual, emotional, spiritual, social, political, and other ways to understand and respond to distressing feelings caused by climate change, when we apply medicalized diagnostic labels, said Cohen, “those are culturally-bound words that conquer and take away all of the natural flora and fauna, and just put a highway on there and say, that’s the way you go.”

From a different vantage point, John McKnight described how professionalized mental health services, by recasting the impacts of many social-environmental problems as personal pathologies, effectively depoliticize and disempower entire communities.

McKnight is an iconic grandfather-emeritus of community resilience, as he co-founded a widely adapted engagement method called “asset-based community development.” Popularized through the ABCD Institute and books like Building Communities from the Inside Out and The Abundant Community: Awakening the Power of Families and Neighborhoods, his approaches bring neighbors together to share “assets” such as passions, knowledge, skills, gifts, and available resources, and to collaborate on “mobilizing creative vision” to enhance their lives and neighborhoods and tackle social and environmental problems.

The Careless Society: Community and Its Counterfeits lays out McKnight’s argument that our massive social service industries sabotage this whole process.

The harm starts with these industries’ tendencies to view communities in terms of “needs,” not assets: The mental health services industry, which McKnight frequently uses as an exemplar, sees emotional distress, drug abuse, illness, homelessness, etc.

Although such problems are obviously fueled by broad societal economic inequities, social injustices, and environmental degradation, service industries don’t organize collective social change but instead seek individual “consumers.” So, they reframe social problems as rooted in pathologies or personal deficiencies—mainstream mental health professionals label individuals as mentally ill, addicts, diseased, disabled, etc. Finally, social service industries proclaim that only they can deliver the “expert services” these “deficient” people purportedly “need”—and drain resources from communities while the real societal root problems remain unaddressed.

In summary, writes McKnight, mental health services divert resources from collective, community-driven solutions to social problems, and instead foster dependency on professionals treating individuals. Influenced a half-century ago by the mental patients’ civil rights movement and critiques of the expanding roles of psychiatry and psychology in managing capitalist societies by Ivan Illich (Limits to Medicine), Thomas Szasz (The Therapeutic State), and Michel Foucault (Madness and Civilization), McKnight remains just as critical today—a fact seemingly unknown or ignored among many contemporary community resilience leaders influenced by McKnight’s other ideas.

When I described the training of community resilience workers to “spot symptoms” of climate distress, deliver preliminary counseling, and channel people toward mental health services, McKnight called it a “cultural invasion” or “colonialization” that suppresses other responses to distress.

Similarly, McKnight was already aware that many people work to make communities more “trauma-informed,” so he wasn’t surprised to hear that mental health professionals and community resilience groups are collaborating to teach people that climate change causes “treatable” trauma. “A ‘needs survey’ [of a community] was a set of things that [social service industries] would identify or measure, that allowed for an ever-growing dominance of institutional solutions,” said McKnight. “I think ‘trauma’ is the same racket. It’s a new way that’s spreading control and dominance of professionals. And it’s absolutely unbounded; it is amoeba-like.”

So, what evidence is there that the impacts Cohen and McKnight warn about are happening in contemporary community resilience discussions and initiatives?

Replacing Adaptation and Mitigation with Treatments

Common, understandable reactions to climate change are getting pathologized and medicalized. As ordinary citizens consequently feel inexpert and enfeebled, mainstream mental health approaches influence or determine community resilience agendas.

The process often begins with a muddy tendency to simultaneously view distressing reactions to climate change threats and impacts as understandable and good motivators for community resilience-building and also possible signs of serious mental health problems needing treatment. The effects of pathologizing then seep in.

For example, Hayes’ Climate Psychiatry Alliance-endorsed paper acknowledges the “risk of pathologising” and medicalizing “normal” distress in response to climate change. However, the authors suggest “underdiagnosing” is also risky, and go on to pathologize virtually every negative reaction. They list anxiety, grief, and fatigue alongside PTSD and Major Depressive Disorder as mental health problems caused by climate change, and push for citizens to learn mental health “first aid” techniques that promote medicalized labeling and triaging people towards mental health professionals. As climate change adaptation methods, they list community resilience alongside “pharmacotherapeutics”—without qualification, essentially equating political activism and taking sedatives.

In another study frequently referenced by journalists and community resilience workers, Northern Canadian Inuit people described their lives on the land as like breathing, blood, a limb, and vital energy, and loss of access due to climate changes as devastating, frustrating, and scary.

Lead author Ashlee Cunsolo then framed these findings for news media as, “The mental health impacts [of climate change] were actually what [Inuit] people were identifying as their biggest concern.”

Reframings like this undoubtedly contributed to the Canadian government, after rashes of youth suicides in northern indigenous communities, prioritizing increased funding to mental health services rather than supporting local food production, activity spaces, improved environmental practices, and other approaches commonly used to build community resilience that the youth themselves asked for.

Pathologization and deference to mental health professionals emerge in many Transition Towns. In The Transition Handbook: From Oil Dependency to Local Resilience, founder Rob Hopkins boldly outlined how ordinary citizens can lead climate-friendly innovations in transportation, energy, food, finance, governance, and more. Yet when it came to feelings, Hopkins wrote that he had “no background in psychology,” and let a professional psychologist write that chapter. Chris Johnstone diagnosed us all as oil “addicts” and prescribed self-reflection steps, methods of public engagement, and meeting procedures for activist groups based on treatment programs for substance use disorders.

“Inner Transition” subcommittees often morph into ad hoc emotional support groups, but pathologizing influences still emerge: A resource from a recent webinar circulated through Transition Network advises that mental health treatments can help distressed activists avoid getting addictively “stuck” in “flawed,” imbalanced “brain chemistry.” A shared Post Carbon Institute essay regurgitates antidepressant ad pseudoscience, contending that we struggle to build a more resilient society because we seek dopamine hits while serotonin “spreads happiness signals” and “too little leads to depression.” A workshop on managing reactions to climate change concludes with contacts for mainstream mental health services.

I presented some of these examples to Don Hall, co-director of Transition US, and he emphasized that Transition Towns are mostly independent, volunteer-driven, and engaged in practical projects. “We’re not saying we’re equipped to deal with acute mental health crises,” said Hall.

Yet, I responded, no Transition groups end talks about, say, revitalizing local economies, by advising people with “acute” money problems to consult mainstream credit providers. Why direct people to mainstream mental health services?

“That’s a great question,” said Hall, agreeing there’s a need for clearer strategies surrounding emotional distress and community resilience-building. A burgeoning Transition US “Inner Resilience Network” may grapple with some of these issues—it involves many mental health professionals, but mainly ones bringing spiritual and social-justice perspectives.

Some prominent leaders, like Bob Doppelt, told me they’re well aware there’s a paradigm battle underway. Doppelt, an urban planner, Buddhist, and psychologist, often runs workshops for mental health professionals on channeling climate distress through mindfulness, spiritual views of nature, group cooperativeness, and community resilience-building.

But most mental health professionals, Doppelt said, strongly believe in “individually focused,” pathologized, and medicalized approaches. Some members of Doppelt’s International Transformational Resilience Coalition are psychiatrists involved in the Climate Psychiatry Alliance. “I know they’re trying to move their group away from the medication model,” said Doppelt. “They’re trying to work as hard as they can but not get tossed out of the room.”

The threat posed by that dominant paradigm becomes most starkly visible when mental health professionals declare they know which reactions to climate change are the “mentally ill” ones requiring treatment—whether activists agree or not.

The American Psychological Association report, for example, states that “negative emotions” about climate change are “normal”—unless they’re “extreme” and “interfere” with thinking or acting “rationally.”

The authors don’t specify what “reacting rationally” should look like amid climate change feedback loops that might destroy civilization virtually overnight. But psychiatrist Burns Woodward pronounces in a psychiatry trade journal that people whose feelings are “distressing or disabling,” or who have “catastrophic thinking” about climate disruption have serious mental disorders. “Such patients need treatment with psychotherapy and/or medication,” he writes.

Woodward adds that climate activists are “especially vulnerable,” and therefore it may be clinically advisable to use psychiatric or psychological interventions “to curb internet searches, calls to public officials, and hounding of family members about energy usage.”

Once mental health professionals move from pathologizing distress towards curbing activism with treatments, for Bruce Levine it raises alarms.

Suppressing “Abnormality” and Diversity

“Anybody who takes seriously what a psychologist or psychiatrist declares to be ‘normal,’ ‘abnormal,’ ‘rational,’ or ‘irrational’ is just not paying serious attention to history,” said Levine, a socially-critical psychologist and author of books like Commonsense Rebellion: Taking Back Your Life from Drugs, Shrinks, Corporations, and a World Gone Crazy and Resisting Illegitimate Authority: A Thinking Person’s Guide to Being an Anti-Authoritarian—Strategies, Tools, and Models.

Levine said unscientific, politicized judgments like Woodward’s reveal a real threat: The mental health system has long helped manage society by subduing emotions or behaviors that are legal but viewed as unduly disruptive to dominant cultural norms. Levine’s writings frequently examine how this undercuts burgeoning social-change activism.

There are well-documented, ongoing histories of mainstream psychiatry and psychology pathologizing and coercively treating Black rebellion as psychosis, Native Americans’ spiritual views of nature as schizophrenia, and women’s defiance as hysterical, depressive, and borderline personality disorders. And amid rising social stresses likely to worsen alongside climate change, treatments are increasingly used to subdue disruptive activities in workplaces, schools, prisons, and nursing homes.

So, to many of the millions of Americans who’ve been subjected to forced psychiatric detentions, tranquilization, or electroshock, mental health services aren’t viewed as caring supports for the marginalized, but as threatening, often brutal guardians of dominant norms.

However, said Levine, explaining this to average liberal environmentalists, clouded with prejudices about “the mentally ill,” is like inner-city Black Americans, absent video evidence, describing police to comfortable suburban Whites. “Some will try to get it, they’ll try to understand, but they just can’t at an emotional level,” said Levine. “And in their own head, they’ve had a very different experience; maybe they know psychologists or psychiatrists and they seem like very nice people.”

Linking White privilege, environmentalism, and support for psychiatric oppression isn’t hyperbolic: Both America’s environmental movement and mental health system have historical roots in White supremacism. And environmentalists still skew predominantly White and middle-to-upper class—a demographic more likely to have experienced expensive private psychotherapy than social oppression and psychiatric detentions.

Recently, the Sierra Club, one of America’s largest environmental groups and a community resilience supporter, publicly acknowledged how its founders were eugenicists, excluded people of color, and sought “natural purity” by displacing Natives. “It wasn’t a very good beginning for the conservation movement,” commented Ayako Nagano to me. “It still has a legacy of very white-dominant power structure… The environmental movement has to speak to a wider audience. Otherwise, it will fail.”

Nagano is a Japanese-American lawyer who volunteers with Transition Berkeley, the Inner Resilience Network, the International Transformational Resilience Coalition, and the Green Leadership Trust—the latter of which focuses on expanding involvement by people of color and indigenous descent in environmental organizations.

I discussed with Nagano how eugenicists also helped forge America’s “mental hygiene” laws, and beliefs that Native, Black, and other marginalized groups were “irrational” and “savage” due to genetic brain conditions that required psychiatric intervention. Still today, people of color are more likely to be forcibly tranquilized.

“I think it’s important to acknowledge that,” said Nagano. “Open that wound, and put it in its place.” From oil pipelines cutting through indigenous lands to hurricanes that more severely affect people who are disabled, poor, or Black, Nagano said climate change requires diverse groups to understand each others’ suffering and collaborate.

“Social justice work at this juncture requires emotional intelligence,” she said. Nagano finds certain mental health ideas useful—such as psychobiological descriptions of trauma—but avoids stigmatizing labels. “There’s this need to define and categorize in the Western world that is harmful,” she said. “Diagnosing is really not necessary right now… Everybody is traumatized, everybody is triggered, everybody is feeling challenged.”

Nagano agreed that community resilience groups could benefit by hearing more from people with concerns about mental health approaches. And Levine suggested that the mental health industry’s darker role in our collectively “insane” drive toward climate change is best explained by social activists who’ve been oppressed in the name of mental health. “They’ve been radicalized by their own personal experience,” said Levine, pointing to David Oaks and MindFreedom International.

Suppressing “Extreme” Reactions

For two decades, David Oaks directed MindFreedom, a coalition of groups run by patients and ex-patients fighting for “freedom and human dignity in the face of forced psychiatry.” In the 1970s, Oaks experienced intense, unusual ideas and feelings and was detained, labeled mentally ill, and forcibly tranquilized. But Oaks told me that, for him and many others, “extreme states” can be challenging yet also bring transformative insights about oneself, society, nature, and spirituality—a perspective shared by socially-critical psychotherapists like Stanislav Grof.

So, once freed, Oaks stopped taking psychiatric drugs and recovered through, in part, channeling his feelings into human rights activism. He currently offers consulting on disabilities, community organizing, and environmental sustainability, and decries the mental health system’s role in “climate change Normalgeddon.”

“The big-picture question [about climate change] is: Why are we so numb? Why aren’t we doing the really deep changes?” said Oaks. “The mental health industry is one of the institutions in society that has really controlled our thinking and feeling to keep us so-called ‘normal.’ It’s very dangerous.”

For people struggling inwardly in relation to climate change, Oaks contrarily proposed “going into your extreme deep feelings and thoughts, extreme overwhelming feelings and differences, and translating those into action.” He pointed to Greta Thunberg. Labeled with depression, anxiety, OCD, mutism, and Asperger’s, Thunberg recently described her traits as a “superpower” for her activism, and activism as a boon to her well-being.

“Her willingness to be different is why she went to [Swedish Parliament] every Friday, and that’s become a movement led by young people all over the world,” said Oaks. “That wasn’t called normal.”

Tellingly, a high-profile Australian psychologist last year declared that Thunberg was delusionally “caught up in a doomsday scenario” and she “should be getting treatment.”

An Alternative: Embrace Diversity and Mutual Assistance

Is there a better path forward than climate change-driven community resilience-building groups collaborating with mainstream mental health agencies and organizations? Through all my conversations, one proposal kept emerging: mutual aid.

However, to fully appreciate the potential, it’s vital to understand McKnight’s observations on how professional mental health services quell diversity, creative capacity, and social disruption and change across entire communities.

An email exchange posted by McKnight is illustrative. A crisis line worker wrote that he provided emotional connection for mentally ill, socially isolated callers. Couldn’t McKnight support that? McKnight answered, “Everywhere in my neighborhood and with friends I hear ‘she needs professional help’ as the natural and necessary response to every form of deviance, pain, misbehavior. The result is that our communities are evermore homogenous and incompetent.”

I asked about it, and McKnight explained: “One of the side effects—if not direct effects—of [mental health services] is the competence of the local community to deal with deviance goes down.”

In effect, we’re all losing our capacities to truly care for others in distress and to embrace, celebrate, and incorporate into our lives unusually intense or extreme feelings or behavioral deviances in ourselves or those around us—let alone work together to channel them into constructive community change—because we constantly turn to professionals instead.

But robust, democratic revolution in response to any major challenges affecting communities, including climate change, said McKnight, requires engaged groups of diverse citizens who aren’t just deficient, dependent “consumers” of services. We must “relentlessly” understand ourselves as vital, capable “producers” of our social realities, he said, and our most different, oppressed, or marginalized must always be valued, core participants.

Impassioned, shared commitment to mutual assistance in truly diverse communities, said McKnight, drives grassroots social innovations that can ultimately coalesce into transformative political movements.

Notably, mutual assistance among neighbors remains central to today’s climate change-driven community resilience-building in everything from tool-sharing and renewable energy to neighborhood emergency preparedness—just not explicitly for “mental health.” Yet the proposal fits strikingly with the socially-informed peer support done by some MindFreedom groups and Intentional Peer Support (IPS).

As distinct from co-opted models where peers keep each other engaged with professional mental health services, in the IPS approach, people assist each other through emotional challenges without pathologizing or ceding power to professionals while becoming more engaged together in changing their social circumstances. IPS describes true peer support as “a way of thinking about and inviting transformative relationships” to generate social change and “stronger, healthier, interconnected communities.”

So, could we expand an IPS-like model to encompass buildings, blocks, neighborhoods, and communities, where we’re all peers helping each other grapple with the inner challenges of dealing with and turning back climate change?

Only our society’s cultivated dependence on professional mental health services hinders us, answered McKnight. He described a group of neighbors who surveyed everyone on their block about their skills and gifts, and who added the question, “In your life, if you had big problems, hard times that you have gotten through, would you be willing to share that information with your neighbors?”

This, said McKnight, could create an excellent launchpad for a diverse, asset-based, mutual-aid group that can grapple with both inward difficulties and transformative community resilience-building to help meet the challenges of climate change. “On your block are people whose life is a victory statement,” he said. “Why don’t you get together with them?”

****

MIA Reports are supported, in part, by a grant from the Open Society Foundations

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“Sexual dysfunction is an important side effect of serotonergic antidepressants,” they wrote. “However, sexual dysfunction is often underestimated in clinical trials submitted in support of drug approval. This is because such assessments are based mainly on unsolicited reporting.”

The authors reported on the FDA’s current efforts to develop methodologies for more accurately capturing the scope and severity of sexual dysfunction side effects occurring in trials of new antidepressants.

Khin, Ni A., Phillip D. Kronstein, Peiling Yang, Eiji Ishida, H. M. James Hung, Mitchell V. Mathis, Ellis F. Unger, and Robert J. Temple. “Regulatory and Scientific Issues in Studies to Evaluate Sexual Dysfunction in Antidepressant Drug Trials.” The Journal of Clinical Psychiatry, June 7, 2015. doi:10.4088/JCP.14cs09700. (Abstract)

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“Using magnetic resonance imaged (MRI) brain scans, and clinical data from 1,728 people with major depression and 7,199 healthy individuals, the study combined 15 datasets from Europe, the USA and Australia,” stated a press release about the study from a large, international team of researchers. Most areas of the brain were not different between the groups, except for generally slightly smaller hippocampi in people who’d had a major depressive disorder (MDD) diagnosis for years. “(P)eople who had a first episode of major depression (34 per cent of study subjects with major depression) did not have a smaller hippocampus than healthy individuals, indicating that the changes are due to the adverse effects of depressive illness on the brain” over long time periods, stated the press release.

“This large study confirms the need to treat first episodes of depression effectively, particularly in teenagers and young adults, to prevent the brain changes that accompany recurrent depression,” co-author Hickie said in the press release.

An article about the study in The Conversation then stated that the study had “proved once and for all that recurrent depression shrinks the hippocampus” and “conclusively” causes “brain damage” that leads “to a loss of emotional and behavioural function.”

Critical commenters prompted the Conversation article author to follow up again with Hickie and then change the article text to indicate that this “brain damage” was readily “reversible.” Meanwhile, in The Guardian article, Hickie clarified that the hippocampus wasn’t so much actually being damaged or losing cells as a result of depression, but temporarily losing “connections between cells”, in the same way that can happen to anyone who might “sit in a room doing nothing” a lot.

The Guardian also reported that, “There was some evidence that the hippocampus was larger in those patients taking antidepressants, Hickie said, indicating these medications could have a protective effect.” The Guardian then quoted Hickey to that effect: “There is a lot of nonsense said about antidepressants that constantly perpetuates the evils of them, but there is a good bit of evidence that they have a protective effect.” However, these statements appeared to exist in direct opposition to the evidence provided in the actual study co-authored by Hickie.

The study in Molecular Psychiatry did not provide detailed data on what percentages of participants were taking psychiatric medications or for how long they may have taken them previously; however, some analysis was included about medication users. “With respect to the moderating effects of medication use, no significant effect of the percentage of patients taking antidepressants was observed, only a trend-wise lower hippocampal volume in MDD patients in samples with a higher percentage of patients taking antidepressants,” the study stated.

The authors cited other studies that have suggested that antidepressants could hypothetically have a neuroprotective effect “by enhancing synaptic plasticity, neurotrophic processes and putatively neurogenesis”. However, the authors then noted that this notion that antidepressants could provide such neuroprotective effects “appears to contradict our current observation” in which they found a “trend effect” of “lower hippocampal volume in antidepressant medication users compared to controls”.

They stated that these differences disappeared when they controlled for depression recurrence, and then concluded that, “(I)ntervention studies with pre- and post-antidepressant treatment comparisons are needed to clarify the impact of antidepressant use on hippocampal volume.”

*

Schmaal, L, D J Veltman, T G M van Erp, P G Samann, T Frodl, N Jahanshad, E Loehrer, et al. “Subcortical Brain Alterations in Major Depressive Disorder: Findings from the ENIGMA Major Depressive Disorder Working Group.” Mol Psychiatry, June 30, 2015. http://dx.doi.org/10.1038/mp.2015.69. (Full text)

Chronic depression shrinks brain’s memories and emotions (The Guardian, June 30, 2015)

Patients with recurrent depression have smaller hippocampi (University of Sydney press release on MedicalXpress, June 29, 2015)

Depression damages parts of the brain, research concludes (The Conversation, June 30, 2015)

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“One-third of the doctors erroneously said they believed that most prescription drug abuse is by means other than swallowing the pills as intended,” stated a press release about the study, adding that, “Numerous studies have shown that the most common route by which drugs of abuse are administered is ingestion, followed by snorting and injection, with the percentage of those ingesting the drugs ranging from 64 percent to 97 percent, depending on the population studied.”

The study also reported that “nearly half of the internists, family physicians and general practitioners surveyed incorrectly thought that abuse-deterrent pills — such as those formulated with physical barriers to prevent their being crushed and snorted or injected — were actually less addictive than their standard counterparts. In fact, the pills are equally addictive.”

The authors further stated that 25% of physicians “reported being not at all or only slightly concerned about the potential for opioid diversion from the licit to the illicit market when this practice is in fact common at all levels of the pharmaceutical supply chain.”

Most of the physicians supported more clinical and regulatory control of opioids, however.

“Physicians and patients may mistakenly view these medicines as safe in one form and dangerous in another, but these products are addictive no matter how you take them,” the lead author said in the press release. “Doctors continue to overestimate the effectiveness of prescription pain medications and underestimate their risks, and that’s why we are facing such a public health crisis.”

Hwang, Catherine S., Lydia W. Turner, Stefan P. Kruszewski, Andrew Kolodny, and G. Caleb Alexander. “Primary Care Physicians’ Knowledge And Attitudes Regarding Prescription Opioid Abuse and Diversion:” The Clinical Journal of Pain, June 2015, 1. doi:10.1097/AJP.0000000000000268. (Abstract)

Many doctors misunderstand key facets of opioid abuse, study shows (Johns Hopkins Bloomberg School of Public Health press release on ScienceDaily, June 23, 2015)

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A team of researchers from Columbia and Yale universities and the National Institute of Health analyzed antipsychotic prescription data from 60% of all retail pharmacies in the United States for nearly a million patients aged 1 to 24 years in 2006 and 2010. They found that antipsychotic prescribing to young children dropped slightly over that time, while prescribing to adolescents and young adults increased.

“The percentages of young people using antipsychotics in 2006 and 2010, respectively, were 0.14% and 0.11% for younger children, 0.85% and 0.80% for older children, 1.10% and 1.19% for adolescents, and 0.69% and 0.84% for young adults,” they wrote. “In 2010, males were more likely than females to use antipsychotics, especially during childhood and adolescence: 0.16% vs 0.06% for younger children, 1.20% vs 0.44% for older children, 1.42% vs 0.95% for adolescents, and 0.88% vs 0.81% for young adults.”

The NIH press release noted that, “What’s especially important is the finding that around 1.5 percent of boys aged 10-18 are on antipsychotics, and then this rate abruptly falls by half, as adolescents become young adults.”

That fact and other patterns identified in the data, the NIH stated, suggested that the drugs were not being appropriately prescribed. “The U.S. Food and Drug Administration (FDA) has approved antipsychotics for children with certain disorders, particularly bipolar disorder, psychosis/schizophrenia, and autism. However, the research team found that the medication use patterns do not match the illness patterns. The mismatch means that many antipsychotic prescriptions for young people may be for off-label purposes, that is, for uses not approved by FDA. For example, maladaptive aggression is common in ADHD, and clinical trial data suggest that at least one antipsychotic, risperidone, when used with stimulants, can help reduce aggression in ADHD. To date, FDA has not approved the use of any antipsychotic for ADHD, making its use for this diagnosis off-label. In the current study, the combination of peak use of antipsychotics in adolescent boys and the diagnoses associated with prescriptions (often ADHD) suggest that these medications are being used to treat developmentally limited impulsivity and aggression rather than psychosis.”

Commenting in US News & World Report, the medical director of the New York State Office of Mental Health wrote, “In an accompanying editorial, Dr. Christoph Correll and colleagues stress (as he has in earlier work) the powerful and almost immediate problems (for some within 12 weeks) that antipsychotic medications can produce, especially weight gain and high glucose levels (which may predict diabetes) and abnormalities in lipid metabolism. The overreliance on medications in youth is further demonstrated by the finding that less than 25 percent of prescribed youth had any therapy services – which could include teaching parents to better manage their child’s behaviors or youth to control them. And prescribing antipsychotics seems predominantly aimed at aggressive and impulsive behaviors, especially in males, where the disruption in school and home insists on action and remediating symptoms.”

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Olfson M, King M, Schoenbaum M. Treatment of Young People With Antipsychotic Medications in the United States. JAMA Psychiatry. Published online July 01, 2015. doi:10.1001/jamapsychiatry.2015.0500. (Full text)

NIH-funded Study is the First Look at Antipsychotic Prescriptions Patterns in the U.S. (NIH press release, July 1, 2015)

Overprescribing and Underperforming (US News & World Report, July 2, 2015)

Kids With ADHD Getting Wrong Drugs, Study Finds (NBC News, July 1, 2015)

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Involving psychiatric researchers from the University of Louisville, Tufts, Stanford and the University of Pennsylvania, the study described rapid cycling as a tendency among some patients with bipolar to have four or more episodes of mania or depression in a 12-month period. The researchers did a secondary analysis from the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) with 68 people diagnosed with bipolar, including 18 identified rapid cyclers, who had already “achieved clinical recovery” for at least two months while taking both an antidepressant and a mood stabilizer. These people were then randomized into antidepressant continuation or discontinuation groups while their mood stabilizer was continued.

“(I)n all groups except the rapid cyclers maintained on antidepressants, distributions were skewed toward zero, meaning most patients had few if any depressive episodes,” the researchers wrote. “In the (rapid cyclers) group maintained on antidepressants, the distribution was normal, meaning most patients had 2-4 depressive episodes.”

“In this sample, long-term continuation of antidepressants was associated with more mood episodes in patients with rapid-cycling bipolar disorder, particularly with three-fold increased rate of depressive episodes in the first year of follow-up,” they stated. “These data represent the first randomized data with new generation antidepressants, and they confirm the only other randomized study, conducted with tricyclic antidepressants.”

The researchers conceded that their sample size was limited, but they said they attempted to compensate for that by using descriptive measurements — such as numbers of episodes — rather than relying on p-value estimates of effects.

Conversely, they noted that their sample consisted of “a selected population of patients who had responded to antidepressants for acute bipolar depression, without manic switch. Thus, this was an ‘enriched’ sample of antidepressant-responsive patients. Even so, there appeared to be worsening of depressive episodes over time in subjects with a history of rapid-cycling bipolar disorder… Further, all patients took baseline mood stabilizers, indicating that mood stabilizers were not protective against such antidepressant-related worsening of mood episodes in rapid-cycling bipolar disorder, at least in the depressive pole.”

They concluded: “Even with pre-selection for good antidepressant response and absence of acute mania related to antidepressants, and despite concurrent mood stabilizer treatment, a priori analysis of rapid cycling status predicted more depressive episode criteria in those who continued antidepressant treatment as opposed to discontinued antidepressant treatment. This decreased efficacy of antidepressants supports previous claims of limited clinical utility and lack of safety in long term treatment of (bipolar disorder) patients with (antidepressants).”

An analysis of the study is also available on Medscape Medical News.

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El-Mallakh, Rif S., Paul A. Vöhringer, Michael M. Ostacher, Claudia F. Baldassano, Niki S. Holtzman, Elizabeth A. Whitham, Sairah B. Thommi, Frederick K. Goodwin, and S. Nassir Ghaemi. “Antidepressants Worsen Rapid-Cycling Course in Bipolar Depression: A STEP-BD Randomized Clinical Trial.” Journal of Affective Disorders 0, no. 0. Accessed June 29, 2015. doi:10.1016/j.jad.2015.04.054. (Abstract)

Discontinue Antidepressants in Rapid-Cycling Bipolar Disorder (Medscape Medical News, June 22, 2015) (Registration required)

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INESSS “has concluded that psychotherapy is as effective as medication and does a better job at preventing relapse, for the most common – and costly – mental illnesses, depression and anxiety,” stated the Globe. “What’s more, the report found that in countries with more public coverage, psychotherapy is cheaper in the long run than treating moderate depression and anxiety with drugs, the treatment offered most often in Canada’s health-care system.”

The INESSS report stated that, “Compared with pharmacological treatment, psychological interventions have a better incremental cost-effectiveness ratio and greater profitability in the long term,” in part because “the benefits of psychotherapy last longer after the end of treatment than those of medication.”

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Quebec health institute calls for psychotherapy as front-line treatment choice (The Globe and Mail, June 25, 2015)

INESSS Website

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“The House Appropriations Committee has inserted a provision in a bill providing funding for the departments of Labor, Health and Human Services (HHS), and Education that would zero out funding for the AHRQ, whose 2015 budget was $440 million,” reported MedPage Today. “A move by Rep. Lucille Roybal-Allard (D-Calif.) to restore the funding failed on a voice vote. The appropriations bill, which the committee approved Tuesday by a vote of 30-21, must be approved by the full House as well as the Senate; the AHRQ’s fate in the latter chamber is unclear.”

Political efforts were previously mounted in 2010 and again in 2012 to eliminate the Agency for Healthcare Research and Quality (AHRQ), reported MedPage Today. According to various sources, the AHRQ investigates issues related to patient safety, especially in hospital settings. It generates reports and creates guidelines revolving around cost and quality of health services, medical practice patterns, access to care, and treatment outcomes.

“AHRQ also disseminates research that identifies the root causes of threats to patient safety, provides information on the scope and impact of medical errors, and examines effective ways to make system-level changes to help prevent errors,” wrote Lerner in Philly.com in 2012 when the agency’s budget was last threatened. “To be sure, defunding AHRQ would cause havoc in medical research. About 42 percent of academic research organizations that are members of Academy Health, a leading umbrella group for research, report receiving funding from AHRQ, as does ECRI, where I work.”

AHRQ also supports the work of the US Preventive Services Task Force, which has reviewed the scientific evidence and repeatedly recommended against mass mental health screening, as previously reported in Mad in America.

“Assaults on health-services research raise a more fundamental question,” asked Lerner. “Why is objective information so threatening?”

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House Committee Votes to Defund AHRQ (MedPage Today, June 24, 2015)

AHRQ And The Essential ‘Both/And’ Of Federal Investments In Medical Discoveries (Health Affairs Blog, June 29, 2015)

Keep health info coming (Philly.com, August 8, 2012)

AHRQ website

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One study in children and youth published in the Journal of Clinical Psychiatry found that taking antidepressants or the antipsychotic risperidone were associated with reduced bone mass. The University of Iowa-led team examined 94 boys aged 7 to 17 treated with risperidone for 6 months or more and compared their bone mass development relative to their respective ongoing use or discontinuation of risperidone or SSRI antidepressants. They found that the use of the psychiatric drugs was linked to bone growth impairment.

“Chronic SSRI treatment in children and adolescents is associated with reduced, albeit stable, bone mass for age, while chronic risperidone treatment is associated with failure to accrue bone mass,” the researchers concluded.

Publishing in Injury Prevention, a Northeastern University in Boston-led team examined data from the US PharMetrics Claims Database. “The study included more than 137,000 women ages 40 to 64 with no mental health issues who started SSRIs between 1998 and 2010,” reported MedPage Today. “The investigators compared this group with more than 236,000 women of the same age prescribed H2 antagonists or proton pump inhibitors (PPIs), typically used to treat indigestion, over the same time frame.” In the study, the researchers stated that, “SSRIs appear to increase fracture risk among middle-aged women without psychiatric disorders, an effect sustained over time, suggesting that shorter duration of treatment may decrease fracture risk.” An independent commentator told MedPage Today that the 76% percent increase in fractures after one year of SSRI use needed to be considered against the relatively low risk of fractures in that age group.

Meanwhile, a study led by University of Tokyo researchers published in PLoS One examined records for 140,494 patients of which 830 suffered from in-hospital fractures. They determined that, “Short-acting benzodiazepine hypnotics and ultrashort-acting non-benzodiazepine hypnotics may increase risk of bone fracture in hospitalized dementia patients.”

And another study in the Journal of Clinical Psychiatry involved patients diagnosed with schizophrenia. Taiwanese researchers examined records of 605 cases of hip fracture and 2,828 matched controls over ten years from the National Health Insurance Research Database in Taiwan. They found that antipsychotic use was linked to a 61% increase in risk of hip fracture and concluded that, “These results extend previous findings and demonstrate an increased risk of hip fracture associated with antipsychotic use in schizophrenia subjects.”

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Calarge, Chadi A., Trudy L. Burns, Janet A. Schlechte, and Babette S. Zemel. “Longitudinal Examination of the Skeletal Effects of Selective Serotonin Reuptake Inhibitors and Risperidone in Boys.” The Journal of Clinical Psychiatry, May 27, 2015, 607–13. doi:10.4088/JCP.14m09195. (Abstract)

Tamiya, Hiroyuki, Hideo Yasunaga, Hiroki Matusi, Kiyohide Fushimi, Sumito Ogawa, and Masahiro Akishita. “Hypnotics and the Occurrence of Bone Fractures in Hospitalized Dementia Patients: A Matched Case-Control Study Using a National Inpatient Database.” PLoS ONE 10, no. 6 (June 10, 2015): e0129366. doi:10.1371/journal.pone.0129366. (Full text)

Sheu, Yi-han, Amy Lanteigne, Til Stürmer, Virginia Pate, Deborah Azrael, and Matthew Miller. “SSRI Use and Risk of Fractures among Perimenopausal Women without Mental Disorders.” Injury Prevention, June 25, 2015, injuryprev – 2014–041483. doi:10.1136/injuryprev-2014-041483. (Full text)

Antidepressants Linked to Bone Fractures in Menopausal Women (MedPage Today, June 25, 2015)

Wu, Chi-Shin, Chia-Ming Chang, Yu-Ting Tsai, Ya-Wen Huang, and Hui-Ju Tsai. “Antipsychotic Treatment and the Risk of Hip Fracture in Subjects With Schizophrenia: A 10-Year Population-Based Case-Control Study.” The Journal of Clinical Psychiatry, June 23, 2015. doi:10.4088/JCP.14m09098. (Abstract)

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The seminal “Treatment for Adolescents With Depression Study (TADS)” published in JAMA Psychiatry in 2007 and involving researchers from NIMH and many universities, compared the effects on depression in teens of the antidepressant fluoxetine (FLX), cognitive behavioral therapy (CBT), placebo (PBO), and combined CBT and fluoxetine. A number of other reports on the TADS study were also published, including one in 2009 in the Journal of Clinical Psychiatry entitled, “Suicidal Events in the Treatment for Adolescents with Depression Study (TADS)”. Suicidal events were defined as “discrete episodes of suicidal ideation, suicidal attempts, or preparatory acts toward an imminent attempt”, and in the study over half of these events led to hospitalization of the youth. The NIMH-led study authors stated, though, that there were no significant differences in the rates of these suicidal events for youth taking either the antidepressant fluoxetine (Prozac) or placebo, and that, “Most suicidal events occurred in the context of persistent depression and insufficient improvement, without evidence of medication-induced behavioral activation as a precursor.”

However, a brief footnote to a table in the JCP study alerted child and adolescent psychiatrist Göran Högberg of Sweden’s Astrid Lindgren Children’s Hospital to a misleading way in which the data had been handled. On a table titled, “Suicidal Event Categories”, a footnote read, “Treatment at time of event was different from the randomized one for 3 CBT and 9 PBO patients, who had started antidepressant medication due to poor response to assigned treatment.”

Essentially, after 12 weeks of the 36-week TADS study, some of the youth who had been taking placebo started taking the antidepressant instead. And it was only after these youth started taking the drug that they experienced suicidal events. But the NIMH researchers had not included that fact in any of their analyses.

So Högberg and co-authors David Antonuccio and David Healy conducted a new analysis of the data based on this revelation. The NIMH researchers had reported that 16 youth on fluoxetine had experienced suicidal events compared to 12 youth taking placebo, a non-significant difference. But Högberg’s team found that, of those 12 in the placebo group, only 3 suicidal events actually took place while the youth were taking placebo, while the other 9 took place after they’d switched to fluoxetine. Consequently, they determined, the participants in the trial were in fact over four times as likely to experience suicidal events while taking the drug.

“The analysis of the data showed that there was a statistically significant difference in proportion of youths with suicidal events between the PBO condition (2.7%) and the FLX treatment (11%),” concluded Högberg’s team.

They added, “What we also did note was that the suicidal events in the study were evenly distributed over the entire time period; thus highlighting that the risk for suicidal events in SSRI-treated adolescents appears to be increased up to eight months after the start of medication.”

“None of the seven abstracts from TADS publications mentioned the fact that there were four times more suicidal events with fluoxetine than with placebo during the randomized controlled trial, and that this difference was statistically significant,” stated the researchers.

Prior to the study being published, these revelations from Högberg’s analysis were discussed several years ago in detail by MIA Blogger David Healy and in a post on Mad In America by MIA Publisher Robert Whitaker.

“Among the bizarre misrepresentations in Clinical Trials of psychiatric drugs during the Age of the Decepticons, this one may take the grand prize,” wrote 1 Boring Old Man recently about the NIMH study. Commenting on the new analysis appearing in the International Journal of Risk & Safety in Medicine, he wrote, “It’s years late, and it’s softly presented, but it’s still something of a breakthrough. It’s what we’re hoping for from Data Transparency, but they didn’t have to petition for the data or jump through any hoops as it was just hiding there in plain sight.”
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Högberg, Göran, David O. Antonuccio and David Healy. “Suicidal risk from TADS study was higher than it first appeared.” International Journal of Risk & Safety in Medicine 27 (2015) 85–91 DOI 10.3233/JRS-150645 (Abstract)

the Age of the Decepticons… (1 Boring Old Man, June 18, 2015)

Vitiello, Benedetto, Susan Silva, Paul Rohde, Christopher Kratochvil, Betsy Kennard, Mark Reinecke, Taryn Mayes, Kelly Posner, Diane E. May, and John S. March. “Suicidal Events in the Treatment for Adolescents with Depression Study (TADS).” The Journal of Clinical Psychiatry 70, no. 5 (May 2009): 741–47. (Full text)

“The Treatment for Adolescents with Depression Study (tads): Long-Term Effectiveness and Safety Outcomes.” Archives of General Psychiatry 64, no. 10 (October 1, 2007): 1132–43. doi:10.1001/archpsyc.64.10.1132. (Full text)

The post Antidepressant-linked Suicide Data Doctored In Seminal Study appeared first on Mad In America.

The researchers audited the case files of all 654 people who were being treated with clozapine through mental health services in the west of Ireland, and identified 6 cases of apparent clozapine-induced stuttering. “To the best of our knowledge, this is the largest case series of clozapine-induced stuttering to date and the first to look at the prevalence of clozapine in a relatively large sample of individuals,” they wrote. “Consistent with previous reports, this case series demonstrated an association between clozapine-induced stuttering and either dosage increase or initiation and titration of clozapine(.)”

They also found that the stuttering could be eliminated with either a reduction in dose of the drug or raising doses of the drug in smaller increments during the initiation phase of treatment.

Murphy, Ruth, Anne Gallagher, Kapil Sharma, Tariq Ali, Elizabeth Lewis, Ivan Murray, and Brian Hallahan. “Clozapine-Induced Stuttering: An Estimate of Prevalence in the West of Ireland.” Therapeutic Advances in Psychopharmacology, June 15, 2015, 2045125315590060. doi:10.1177/2045125315590060. (Abstract)

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