Key Update, May 2019, Volume 15, Number 11

 The National Mental Health Consumers’ Self-Help Clearinghouse is now affiliated with the Temple University Collaborative on Community Inclusion!

TO CONTACT THE CLEARINGHOUSE: SELFHELPCLEARINGHOUSE@GMAIL.COM                                                 

TO CONTACT SUSAN ROGERS: SUSAN.ROGERS.ADVOCACY@GMAIL.COM                                                     


Vote to Help Choose Hill Day Priorities for Alternatives 2019!

Whether you can attend the Second Public Policy & Education Academy at Alternatives 2019 or not, the National Coalition for Mental Health Recovery needs your input to determine the legislative priorities of our movement for social justice—both to effectively advocate on Hill Day, July 9, 2019, and for national and state-level advocacy during the year ahead. The Academy—July 8-9, before Alternatives 2019, which will continue through July 11 at The Catholic University, in Washington, DC—provides an important opportunity for people with lived experience to unite and learn about how to be included in the political process, share resources to support their local activism, strengthen our collective voice, and express our concerns to Congress. And more good news: The deadline has been extended to May 31 both for Early Bird registration and to honor a peer leader in your community! The conference theme is “Standing Together, Celebrating Our Gifts, Raising Our Voices.” For more information, click here. To rank your top legislative priorities, click here.

HHS Seeks Members for Interdepartmental Substance Use Disorders Coordinating Committee

The U.S. Department of Health and Human Services is seeking nominations for a new committee “to identify areas for improved coordination related to substance use disorder (SUD) research, services, supports, and prevention activities across all relevant federal agencies…[T]he committee will be composed of both federal and nonfederal members.” For the press release, click here. For more information and to learn how to nominate someone to serve on the committee, click here. Applications for the limited spots are due by 11:59 p.m. [ET] on June 14, 2019.

Courtesy of Kevin Fitts

ACLU Website Offers Tips on How to Stand Up for Your Rights

“Everyone has basic rights under the U.S. Constitution and civil rights laws,” the ACLU says. “Learn more here about what your rights are, how to exercise them, and what to do when hour rights are violated.” The many topics covered include Disability Rights: “People with disabilities face discrimination, segregation, and exclusion. But federal disability rights laws provide protection.” Other topics include Prisoners’ Rights, Protesters’ Rights, LGBTQ Rights, Stopped by Police, and more. For details, click on

Free Webinar on “Using Social Media to Build Rapport with Peers” on June 25

On the last Tuesday of almost every month at 2 p.m. ET, Doors to Wellbeing hosts a free, one-hour webinar. On June 25, 2019, the topic will be “Using Social Media to Build Rapport with Peers.” “This webinar will discuss ways in which youth leaders and advocates can use social media to their advance peer mental health work with peers,” Doors to Wellbeing writes. “Social Media helps build rapport, increase engagement, and spread awareness for different campaigns and events. We will also discuss things to keep in mind such as boundaries, cyberbullying and developing social media agreements with your peers.” To register, click here.

“Mental Health Apps Are Sharing Data Without Proper Disclosure”

“A study of 36 mental health apps (not named in the public release) has revealed that 29 of them were sharing data for advertising or analytics to Facebook or Google, but many of them weren't disclosing that to users,” reports Engadget. “Only six out of 12 Facebook-linked apps told users what was happening, while 12 out of 28 Google-linked apps did the same. Out of the entire bunch, just 25 apps had policies detailing how they used data in any form, while 16 described secondary uses. A handful of these apps (which revolved around issues like depression and quitting smoking) shared particularly sensitive data like health diaries and voluntary substance use reports…” You should “verify that an app has a privacy policy, and check to see where your data is going before you use the app in earnest. Study co-author John Torous also suggested sticking to apps from more trustworthy sources, like health care providers and the government.” For the Engadget article, click here. For the study, published in JAMA Open Network, click here

And for the Risk-Takers Among Us…(Please See the Item Above Before Reading This One)

As “8 Consumer-Friendly Digital Tools to Support Behavioral Health,” published in MobiHealthNews, notes, “From virtual therapy to mindfulness and meditation aids, there’s little shortage of digital tools catching investors’ eyes and breaking into the crowded behavioral health market. Although a number of these services are positioning their business to focus on payers and employers, many others are taking their products directly to consumers via monthly subscriptions, one-time retail purchases or outright free downloads…MobiHealthNews has compiled a selection of eight such consumer-friendly behavioral health tools that have recently been making headlines with new launches, funding or major product updates.” For the article, click here.

Courtesy of Kevin Fitts

Free Curriculum on “Building Financial Wellness” Is Available

“Building Financial Wellness,” a six-part curriculum available for free download, helps people to develop money management skills that can promote their overall recovery, well-being, and health,” writes the Center on Integrated Health Care & Self-Directed Recovery, at the University of Illinois at Chicago. “It guides participants in recognizing what triggers spending, how using credit leads to debt, and ways to cope with challenging feelings about money. Participants also learn to set attainable financial goals. Learning occurs in a context of acceptance and encouragement aimed at increasing participants’ sense of control over their personal finances.” A free instructor guide and participant workbook are included. For details, including how and why to teach the course, click here.

Courtesy of Jacek Haciak

Can Songs Show What It’s Like to Hear Voices? Producers of a  New Album Try.

“The British Columbia Schizophrenia Society has launched a campaign entitled ‘Songs of Schizophrenia,’ allowing people to experience a glimpse of what living with schizophrenia is really like,” according to a recent Daily Hive article, which includes a strong trigger warning: “The song in this story is an immersive experience designed to emulate some possible symptoms of schizophrenia. Some may find the content disturbing. Listener discretion is advised.” Another article, in The Message, reports: “Seemingly normal songs are broken up by messages from an incongruous voice, simulating the ‘auditory hallucinations’ experienced by those living with schizophrenia.” The voices’ messages range from relatively benign to extremely disturbing. For the Daily Hive article, which includes a link to a song, click here. For The Message story about the album, click here. The entire album is available on YouTube, Apple Music, and Spotify, the Daily Hive says.

Volunteers Sought for Advisory Group to Help with Research on Community Participation Efforts in CSC Programs for Transition-Aged Youth with Early Psychosis

The Temple University Collaborative on Community Inclusion seeks 20 volunteers for “a national advisory group to aid us in using a stakeholder-driven approach to identify and validate criteria that can be used to evaluate coordinated specialty care (CSC) programs in terms of their community participation-orientation.” Volunteers must be a transition aged-youth (aged 18-30) with early psychosis who has been/is involved with a CSC program, a family member of such an individual, and/or a “CSC thought leader.” Participants will be involved in the study for nine months over a 20-month period and can earn up to $600. If you qualify and are interested, contact research staff at 215-204-1699 or at For details, click here.

Another Way Inc. in Vermont Seeks Executive Director

Another Way, a community center in Montpelier, Vermont, is seeking an executive director. “Another Way grew out of the psychiatric survivor movement to counter oppressive systems of control, and we continue to advocate for freedom and self-determination of care. Another Way promotes equal rights, participation, and protection of the needs and interests of the peer mental health community; [and] provides advocacy, outreach, information, referrals, crisis intervention, access to housing resources, peer support, supported employment, and educational opportunities, holistic health opportunities and classes. The Executive Director has administrative responsibility for the operation of the program with an annual budget of $430,000 and management of three full-time and 17 part-time staff. Candidates with lived experience of involvement with the mental health system and/or peer community are strongly encouraged to apply. Ability to integrate conflicting perspectives, foster collaboration, and inspire participation across diverse viewpoints and stakeholder interests is a must. Responsibilities include oversight of daily operations, management of personnel, oversight of major improvements to physical plant, management of multiple grants and contracts, and maintaining strong involvement with coalitions. Financial management and budgeting experience is crucial, as is familiarity with peer values and organizations. The salary is $55K - $65K plus full benefits.” To apply, send a cover letter and resume to with the subject line “ED Search” by June 15, 2019.

Half of People Diagnosed with Schizophrenia Did Not Have Schizophrenia, a Small Study Finds; and African-Americans with Severe Depression Are More Likely to Be Misdiagnosed with Schizophrenia

In a small study, “Johns Hopkins Medicine researchers report that about half the people referred to the [Johns Hopkins Early Psychosis Intervention Clinic] with a schizophrenia diagnosis didn’t actually have schizophrenia… People who reported hearing voices or having anxiety were the ones more likely to be misdiagnosed.” In a report in the Journal of Psychiatric Practice, the researchers say that the findings “suggest that second opinions at a specialized schizophrenia clinic after initial diagnosis are wise efforts to reduce the risk of misdiagnosis, and ensure prompt and appropriate patient treatment.” In a related story, a recent Rutgers study has confirmed previous studies, going back decades, saying that African-Americans with severe depression are more likely to be misdiagnosed as having schizophrenia. “Inaccurate diagnosis can have serious consequences,” including sub-par treatment, putting people at risk for getting worse—including as a result of the serious side effects of medication prescribed for schizophrenia—or for suicide, the study’s lead author said. The researchers recommend requiring screening for major depression when assessing black people for schizophrenia. For the article about the Johns Hopkins study, click here. For the article about the Rutgers study, click here.

“As Suicides Rise, Insurers Find Ways to Deny Mental Health Coverage,” Bloomberg Businessweek Reports

“Failures of the mental health system contributed to trends that have lowered U.S. life expectancy over the past three years,” according to a recent article in Bloomberg Businessweek. “From 2008, when Congress passed the parity act, to 2016, the rate at which Americans died by suicide increased 16 percent. The rate of fatal overdoses jumped 66 percent in the same period. ‘The health insurers are not following the federal law requiring parity in the reimbursement for mental health and addiction,’ President Trump’s commission on the opioid crisis wrote in November 2017. ‘They must be held responsible.’” The Mental Health Parity and Addiction Act “requires insurers to provide comparable coverage for mental health and medical treatments,” Bloomberg Businessweek notes. “Even so, insurers are denying claims, limiting coverage, and finding other ways to avoid complying with the law.” For the article, click here. For the report from the president’s commission on the opioid crisis, click here.

Watch Psychiatrists at 2019 APA Annual Meeting React to Psychiatric Survivors’ Videos; And Watch Survivors’ Videos

A coalition of mental health social justice organizations—comprising MindFreedom International, the Law Project for Psychiatric Rights, the Network Against Psychiatric Assault, the Opal Project, and MindFreedom Ireland—invited psychiatric survivors to create short videos describing their negative experiences with psychiatry, and shared them with psychiatrists at the 2019 annual meeting of the American Psychiatric Association in San Francisco. Some of the psychiatrists watched the videos, which detailed people’s experiences with involuntary treatment, coercion, psychiatric abuse, courts, forced drugging, ECT, insulin coma, involuntary outpatient commitment, and more. Click here to view both psychiatrists’ reactions and survivors’ videos.

Courtesy of Amy Smith

“Are Strangers’ Mental Health ‘Recovery Narratives’ Helpful?” The Short Answer Is Yes.

“Researchers at the University of Nottingham in U.K. have reviewed dozens of articles analyzing the helpfulness of other people's ‘recovery narratives’ and found that they can help people overcome their own mental health problems,” Medical News Today reports. The research, part of the Narrative Experiences Online study, “screened hundreds of books and articles from 2000–2018 and identified 45 studies that focused on the therapeutic impact of 629 recovery narratives… The researchers wondered whether recovery stories might help “people who find it difficult to access other forms of mental health treatment, such as people living in rural locations or experiencing social anxiety.” The short answer is yes, “‘as long as possible negative impacts are managed carefully.’ That said, the researchers note that not all recovery narratives will be 100 percent helpful, and some may even do more harm than good. For example, stories that include detailed personal accounts of self-harm— especially those that are related to eating disorders—may trigger further trauma in people dealing with similar problems.” For the article, click here.

Report on How “Medication Overload” Is Harming Older Americans Is Available for Free Download

“The United States is in the grips of an unseen epidemic of harm from the excessive prescribing of medications. If nothing is done to change current practices, medication overload will lead to the premature deaths of 150,000 older Americans (original emphasis) over the next decade and reduce the quality of life for millions more,” according to a Lown Institute press release about its report on the crisis: Medication Overload: America’s Other Drug Problem—How the Drive to Prescribe Is Harming Older Adults. For a link to the press release, which includes several takeaways as well as links to the executive summary and the full report, click here.

Courtesy of Rebecca Miller

“FDA Puts Tough Warning Label on Ambien, Lunesta, Other Sleep Aids” After Deaths and Severe Injuries

After 20 people who had taken prescription insomnia medications died as a result of “complex sleep behaviors,” the Food and Drug Administration has ordered a prominent warning label on “eszopiclone (Lunesta), zaleplon (Sonata) and zolpidem (Ambien, Ambien CR, Edluar, Intermezzo and Zolpimist),” U.S. News reports. Forty-six other reports “involved serious but nonfatal injuries among people who took prescription sleep meds and then engaged in sleepwalking, sleep driving and other activities while not fully awake.” “’This warning is likely to affect a lot of people, as millions take hypnotics—sleep aids—at least occasionally,’ said Dr. Steven Feinsilver, who directs the Center for Sleep Medicine at Lenox Hill Hospital in New York City.” For the article, click here.

Growing Up in Poverty Increases Diagnoses of “Psychosis-Spectrum” Mental Health Disorders, Study Finds

“Growing up in impoverished urban neighborhoods more than doubles your chances over the average person of developing a psychosis-spectrum disorder by the time you reach middle adulthood, according to a new UC Davis and Concordia University study of nearly 4,000 families who were monitored over 30 years,” Science Daily reports. “The results of the study[—published in Development and Psychopathology—]suggest that intervention through social policies and investment in neighborhood improvements, as well as identifying those most in need of help by observing certain child behaviors, could prevent future debilitating illnesses and the societal and personal costs associated with them, said the study's authors.” For the Science Daily article about the study, click here. For more about the social determinants of mental health, click here.

“Disability” Is Not a Dirty Word, Psychologists Say

“Erasing the term ‘disability’ from the collective vocabulary is misguided and has harmful sociocultural implications, according to a new article by leading scholars and rehabilitation psychologists in the field of disability identity. The article is part of a special issue of the journal Rehabilitation Psychology that explores disability and social justice in rehabilitation research,” according to a recent Vanderbilt University press release. The paper, whose six authors are all psychologists who identify as having a disability, “outlines the rationale behind, and importance of, the broader #SaytheWord movement, a social media call to embrace disability identity.” “Disabled people are reclaiming our identities, our community, and our pride,” the authors say. “We will no longer accept euphemisms that fracture our sense of unity as a culture.” For the Vanderbilt University press release, click here.

“Ex-Patients Tell of Force, Trauma, and Sexual Abuse in America’s Mental Hospitals”

In a Mad In America survey of people who had been patients in mental hospitals, “more than half of the [486] respondents described their psychiatric ward experience as ‘traumatic.’ Thirty-seven percent said they were physically abused in some way (with forced treatment included as an example of physical abuse). Seven percent said they were sexually abused. Only 27 percent said they felt ‘safe and secure’ while on the psych ward. Only 17 percent said they were ‘satisfied with the quality of the psychiatric treatment’ they received.” “‘If it is within my power, I will never ever allow myself to be coerced into going to one of those places ever again,’ said one female respondent, who, most recently, had been in a California hospital in 2013. ‘My God, what horrific things go on in those places.’” Although the respondents were self-selected, not a random sampling, “the experiences reported in this survey echo findings from other investigations of the treatment of patients in mental hospitals…” For the article, click here.

The New Yorker Reviews Mind Fixers, a New Book on “The Troubled History of Psychiatry”

In Mind Fixers: Psychiatry’s Troubled Search for the Biology of Mental Illness, “Anne Harrington, a history-of-science professor at Harvard, follows ‘psychiatry’s troubled search for the biology of mental illness,’ deftly tracing a progression of paradigms adopted by neurologists, psychiatrists, and psychologists, as well as patients and their advocates,” writes Jerome Groopman in The New Yorker. His article—subtitled “Challenges to the legitimacy of the [psychiatric] profession have forced it to examine itself, including the fundamental question of what constitutes a mental disorder”—is more of an essay about psychiatry than a mere book review. For the New Yorker article, click here. For a related NPR story about Mind Fixers, “How Drug Companies Helped Shape a Shifting Biological View of Mental Illness,” click here.

The May 2019 Digest of Articles about the Criminal Justice System, in Which Many Individuals with Mental Health Conditions Are Incarcerated (and the Key Update continues after this Digest)

Here is the May wrap-up of stories about the criminal justice system. (Note: Some of the titles and other language are not politically correct but are reproduced as written.) For “Solitary confinement worsens mental illness. A Texas prison program meant to help can feel just as isolating,” click here. For “He’s Living with Severe Mental Illness. Should He Face the Death Penalty?” click here. For “Law Enforcement Mental Health Learning Sites,” click here. For “New York Prisons Offer ‘Tough Love’ Boot Camp Programs. But Prisoners Say They’re ‘Torture’ and ‘Hell,’” click here. For “It’s time to end the callous policy of inmate Medicaid exclusion,” click here. For “Ending Mass Incarceration: Ideas from Today’s Leaders,” click here. For “How people with mental illness become prisoners in Alabama,” click here. For “Who’s Legally Responsible for Prison and Jail Suicides,” click here. For “Crime Victims Get Chance to Confront Perpetrators Through Special Program,” click here. For “‘Cooking Them to Death’: The Lethal Toll of Hot Prisons,” click here. For “A pregnant inmate came to term in jail. Lawyers say she was forced to give birth there—alone,” click here. For “Landmark Study Compiles Data on Pregnant Women in Prisons,” click here. For “People in Prison Are Way More Likely to Have Dyslexia. The Justice System Sets Them Up to Fail,” click here. For “‘No One Feels Safe Here’: Life in Alabama’s Prisons. Four men inside diagnose a hellscape the Department of Justice called cruel and unusual,” click here. For “A bill to increase parole for ‘elder’ inmates now has the Brooklyn DA’s support,” click here. For “The Supreme Court’s Death Drive: Five conservative justices are bent on defending a policy that is unpopular, expensive, and cruel,” click here. For “Where ‘Returning Citizens’ Find Housing After Prison,” click here. For “How Jails Are Replacing Visits with Video,” click here. For “Drawing from Memory: A Former Prisoner Creates Art from Pain and Loss,” click here. For “Is Prison Necessary? Ruth Wilson Gilmore Might Change Your Mind,” click here. For “Whistleblowers describe culture of abuse, racism and coverups at Florida prison,” click here. For “No One Should Be Forced to Give Birth Alone in a Jail Cell,” click here. For “America must face and fix its unjust prison system,” click here. For “Juvenile Lifers Struggle to Navigate Reentry After Release,” click here. For “Insult to Injury: Arizona Inmates Get Billed for Prison Health Care,” click here. For “Suing from Prison,” click here. For “Five Myths About Prisons,” click here. For “From police to parole, black and white Americans differ widely on their views of criminal justice system,” click here.


If You Have Experienced Psychosis, “Psychosis Beyond the Box” Wants to Hear From You.

“Psychosis Beyond the Box” seeks to gather anonymous descriptions of “aspects of psychosis that are often neglected, such as felt presences, visual or quasi-visual experiences, and alterations of space, time or distance,” as well as strategies to help with any distressing or challenging aspects of the experiences. The narratives will be compiled and shared in early psychosis programs and other service settings across the U.S. A major aim of the project—which is not a research project—is “to validate the diverse range of things people with psychosis experience, and help people, especially young adults experiencing psychosis for the first time, feel less alone and isolated (in these experiences).” For more information about the project, based at the University of South Florida, or to share your story, click here. Questions? Write to Nev Jones ( or

“Experiences with Hospitalization” Survey Wants to Hear from You

“The purpose of this survey is to help us understand people's lived experience with voluntary and involuntary treatment because of suicidal thoughts. It was created by people with lived experience…We are planning to use this information to facilitate discussions with suicidologists and the suicide prevention community about the impact of the use of these interventions, particularly within marginalized populations. We feel the voice of people with lived experience with these interventions has not had adequate opportunity to be heard, and hope that by completing this survey anonymously, people who have been most impacted can find a safe way to share their experiences. Please note that this is not a research project.” For more information and/or to participate, click here.

Thanks, Leah Harris

Researchers at Trinity College Dublin Seek Participants for Depression Study

Trinity College Dublin researchers write: “We are a team of psychologists at Trinity College Dublin who are trying to better understand depression. We are interested in using language to predict the occurrence of depression early. Our hope is that in doing so we can one day be able to help doctors provide treatments earlier and maybe even prevent depression altogether. In order to participate, you must be at least 18 years old, have had a Twitter account for at least one year, [and] have at least 500 Tweets. Interested in participating? Learn more by clicking. If not, thanks for taking the time to read about our research.” For the “continue” link to more information, click here.

Mental Health First Aid Australia Seeks Research Participants to Update MHFA Guidelines

Mental Health First Aid Australia is inviting people from Australia, UK, Canada, Denmark, Finland, Ireland, the Netherlands, France, Switzerland, New Zealand, Sweden, and the USA who have expertise in the field of psychosis to participate in research whose goal is to update the Mental Health First Aid guidelines for psychosis, which were last updated in 2008. Invited participants include people with lived experience of psychosis, people who have cared for or provided significant support to someone with psychosis, and professionals with research, education, or clinical experience related to psychosis. For more information, click here.

International Survey on Antipsychotic Medication Withdrawal Seeks Respondents

“Have you taken antipsychotic medication (such as Zyprexa, Seroquel, Abilify, Risperdal, Haldol, Geodon, Stelazine, and others), for any condition or diagnosis, with or without other medications? And did you ever stop taking antipsychotics, or try to stop taking them? Are you 18 years or older? If yes, you can take this survey about antipsychotic withdrawal and attempts to withdraw, including if you stopped taking them completely or if you tried to come off and still take them. The survey aims to improve mental health services by better understanding medication withdrawal. Lead researcher is Will Hall, a therapist and Ph.D. student who has himself taken antipsychotics. Service users/survivors/consumers from around the world also gave input. The study is sponsored by Maastricht University in the Netherlands; co-sponsors include the International Institute for Psychiatric Drug Withdrawal. Questions? Please contact”  For more information or to take the survey, click on

What Is a Peer Support Specialist? Your Opinion Is Wanted

“On behalf of iNAPS, a national workgroup has developed a proposed definition for peer support specialist to submit for federal standard occupational classification through the U.S. Department of Labor,” iNAPS writes. “We are asking you to complete this short survey regarding the proposed definition...The proposed title, Peer Support Specialist, does not prevent the use of other job titles, such as Recovery Coach, Peer Bridger, Peer Navigator, etc.” To complete the survey, click here.

Virtual Group Is Launched to Advance Peer Research Capacity, Leadership, and Involvement

Nev Jones, Ph.D., and Emily Cutler, a doctoral candidate, have launched a new listserv dedicated to building research capacity, leadership, and involvement among peers, survivors, and service users.  Dr. Jones, assistant professor, Department of Mental Health Law & Policy, University of South Florida, was part of the team that developed “User/Survivor Leadership & Capacity Building in Research: White Paper on Promoting Engagement Practices in Peer Evaluation/Research (PEPPER),” published by the Lived Experience Research Network. For the white paper, click here. Anyone interested in joining the virtual group can email Nev at

Save the Date! NARMH Conference in Santa Fe, NM, August 26-29, 2019

The 2019 National Association for Rural Mental Health (NARMH) annual conference will be held in Santa Fe, N.M., August 26-29, 2019. The conference will focus on “Surviving to Thriving, Workforce Issues, Innovations in Service Delivery, Dilemmas in Addressing Trauma, Rural and Frontier Workforce Development Strategies, Embracing the Reality of Behavioral Health in Rural Communities—Struggles, Responses and Successes, Co-Occurring Substance Use Disorders and Other Topics.” For more information and/or to register, click here.

Save the Date! NARPA Annual Rights Conference September 18-21 in Hartford, Connecticut

“For more than 30 years, NARPA [National Association for Rights Protection & Advocacy] has provided an educational conference with inspiring keynoters and outstanding workshops. We learn from each other and come together as a community committed to social justice for people with psychiatric labels & developmental disabilities.” For more information, click here.

Disclaimer: The Clearinghouse does not necessarily endorse the opinions and opportunities included in the Key Update.

About The Key Update

The National Mental Health Consumers’ Self-Help Clearinghouse is now affiliated with the Temple University Collaborative on Community Inclusion!

The Key Update is the free monthly e-newsletter of the National Mental Health Consumers’ Self-Help Clearinghouse. Volume 15, No. 11, May 2019. For content, reproduction or publication information, please contact Susan Rogers at Follow Susan on Twitter at @SusanRogersMH