Key Update, December 2018, Volume 15, Number 6

Key Update, December 2018

Volume 15, Number 6

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

Please don’t forget to check out the “From Previous Editions of the Key Update but Still Fresh” Department, under the monthly digest of stories about the criminal justice system!

TO CONTACT THE CLEARINGHOUSE: SELFHELPCLEARINGHOUSE@GMAIL.COM                                                 

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


Should the HIPAA Rules Be Loosened? HHS Wants Your Opinion

Do you think the HIPAA (Health Insurance Portability and Accountability Act) Rules, which protect individuals’ privacy and security, should be relaxed? The U.S. Department of Health and Human Services (HHS), Office for Civil Rights (OCR), wants to know. “[I]n recent years, OCR has heard calls to revisit aspects of the Rules that may limit or discourage information sharing needed for coordinated care or to facilitate the transformation to value-based health care,” OCR writes. So do you think that any of the Rules “may present obstacles to these goals without meaningfully contributing to the privacy and security of protected health information (PHI) and/or patients’ ability to exercise their rights with respect to their PHI”? One example OCR offers is “facilitating parental involvement in care.” Another is “Changing the current requirement for certain providers to make a good faith effort to obtain an acknowledgment of receipt of the Notice of Privacy Practices.” Public comments are due by February 11, 2019. For details and for the comment link, click here.

Thanks, Elizabeth R. Stone

“Ivy League Schools Fail Students with Mental Illness,” a New Study Confirms; Active Minds Offers Five Ways to “Transform the Mental Health Conversation on Your Campus”

A new “White Paper on Mental Health in the Ivy League,” recently published by The Ruderman Foundation, “investigates the practice of imposing leaves of absence on students who are experiencing mental illness. The study grades the leave of absence policies of all eight [Ivy League] universities, none of which received higher than a D+.” According to the Ruderman website, “While a leave of absence is potentially useful to both the student and the school, many schools also use the leave of absence as a tool for discrimination, pushing students out of school who are entitled by law to receive accommodations and support which would enable them to stay…The paper also illuminates stories from several high-profile cases in which courageous students from Ivy League schools have told their stories of struggle and discrimination.” For details and to download the paper, click here. For Active Minds’ “5 Ways to Transform the Mental Health Conversation on Your Campus,” click here.

Guardianship: “The Most Punitive Civil Penalty…With the Exception of the Death Penalty”; Jenny Hatch Project Offers State-by-State Information on Guardianship Laws

A recent New York Times article highlights the evils of guardianship, which the late Claude Pepper—who championed the rights of older adults during his long career in Congress—called “the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty.” The article focuses on Phyllis Funke, a 77-year-old journalist who has “a master’s degree from Columbia University, a pilot license and—she believes—several hundred thousand dollars in investments.” But this cut no ice with Adult Protective Services, called by her building’s managers, who had been trying to evict her for hoarding. The city’s psychiatrist “testified that she suffered from ‘unspecified bipolar and related disorder, rule out bipolar II disorder, hoarding disorder and unspecified personality disorder.’” But Funke countered with “a letter from a psychiatrist declaring her stable and ‘perfectly competent to handle all her affairs.’” The Times asks, “In a country that guarantees the right to life, liberty and the pursuit of happiness, at what point does a person forfeit the right to make bad decisions?” To read more, click here. For state-by-state information on guardianship laws from the Jenny Hatch Project, click here.

Nearly Half of People Are Expected to Take Prescribed Drugs Longer Than Needed, Study Says

“Nearly half of primary care patients were prescribed antidepressants, bisphosphonates, or proton pump inhibitors (PPIs) for longer than necessary, according to findings of a study published in Annals of Family Medicine…The analysis included 50,813 patients aged 18 years or older seen from 2010 through 2016…For each of the three commonly prescribed drug classes (antidepressants, bisphosphonates, and PPIs), the researchers identified cases in which the prescription duration exceeded the recommended time for treatment, using conservative…evidence-based inclusion criteria.’ For antidepressants, that meant including prescriptions for 15 months or longer when drug treatment is recommended for six months after resolution of an acute mood episode…” For the article, which includes a link to the study, click here. For an article about medication-free psychiatric treatment in Norway, from the March 2017 edition of the Key Update, click here.

CMS Invites Comments on Proposed Changes to Medicaid and CHIP Managed Care Regulations; Deadline: January 14, 2019

The Centers for Medicare & Medicaid Services (CMS) is inviting public comment on proposed changes to Medicaid and CHIP managed care regulations. “The changes reflect a broader strategy to relieve regulatory burdens; support state flexibility and local leadership; and promote transparency, flexibility, and innovation in care delivery,” according to a CMS press release. Read more and draw your own conclusions. For details and a link to comment, click here.

Thanks, Amy Smith

Free Webinar on “Peer-run Crisis Respite Homes: Tips for Rural Areas” on January 29

On the last Tuesday of almost every month at 2 p.m. ET, Doors to Wellbeing hosts a free, one-hour webinar. On January 29, 2019, Doors to Wellbeing will present “Peer-run Crisis Respite Homes: Tips for Rural Areas.” “Learn about the journey of creating Rhonda’s House, a new peer-run crisis respite home in the rural town of Dewitt, Iowa (population of 5,000). This webinar will touch on how key stakeholders collaborated on Rhonda’s House and were able to gain non-profit status, build a board of directors, hire peer staff, and find creative funding strategies…” For more information and a link to register, click here.

“In ‘Game-Changer,’ Hawaii Given Approval to Use Medicaid Dollars to Help Chronically Homeless”; CHCS Policy Brief Offers Strategies to Expand Access to Housing and Related Services for People Who Are Homeless

“Hawaii is one of the first states in the country given the go-ahead to use federal Medicaid dollars—typically reserved for health care costs—to help homeless people move into housing,” Hawaii News Now reports. While Medicaid traditionally covers doctors’ visits and hospital stays, “it will now pay for services in Hawaii like job training and transportation to look at apartments.” Said the Lt. Governor-elect, a medical doctor, “This is a game-changer in many ways.” For the article, click here. In a related story, in 2016 the Center for Health Care Strategies (CHCS) Inc. published a 10-page brief highlighting “strategies for expanding access to housing and related services for Medicaid beneficiaries who are chronically homeless.” Among the eight strategies are “Design incentives for health plans to invest in housing-related services,” “Target limited resources to a specific subset of the homeless population,” and “Engage advocacy efforts at the federal level.” For “Supportive Housing for Chronically Homeless Medicaid Enrollees: State Strategies,” click here.

MindFreedom International Has an Elegant New Website and a Distinguished New Executive Director

MindFreedom International (MFI) has hired Ronald Bassman—a psychiatric survivor, licensed psychologist, and a past president of the National Association for Rights Protection and Advocacy (NARPA)—as its new executive director. The newly revamped MFI website has additional information about the new MFI head; a Save the Date announcement for the May 18, 2019, protest of the American Psychiatric Association; a library of resources about mental health, psychiatry, human rights, involuntary treatment, organizing and activism, and alternatives; historic photographs; and more! For the brand-new MFI website, click on

Thanks, Amy Smith

SAMHSA Now Offers an “Early Serious Mental Illness Treatment Locator”; NASMHPD Has an Early Intervention in Psychosis Virtual Resource Center

The Substance Abuse and Mental Health Services Administration (SAMHSA) has launched an Early Serious Mental Illness Treatment Locator, “a confidential and anonymous source of information for persons and their family members who are seeking treatment facilities in the United States or U.S. Territories for a recent onset of serious mental illnesses such as psychosis, schizophrenia, bi-polar disorder and other conditions. These evidence-based programs provide medication, therapy, family and peer support, assistance with education and employment and other services…[T]he earlier that an individual receives treatment, the greater likelihood that these treatments can lead to better outcomes and enable people to live full and productive lives...” For the locator, click here. (This item came from the November 29, 2018, edition of the NRI Newsletter, which has other items of interest. For the NRI newsletter, click here.) For the Early Intervention in Psychosis virtual resource center of the National Association of State Mental Health Program Directors (NASMHPD), click here.

Thanks, Anthony Fox

2019 NARMH Conference Invites You to Submit a Proposal

The National Association for Rural Mental Health (NARMH) is inviting you to submit a proposal to present at the 2019 annual NARMH conference, August 26-29 in Santa Fe, New Mexico! The theme is “From Surviving to Thriving: Embracing Connections.” For more information, and/or to submit a proposal (deadline “February 1, 2019, or until the agenda is filled”), click here.

“Why Denver Voted to Fund Mental-Health Treatment”

“A year after Colorado saw a record 1,175 suicides and an all-time high number of drug overdoses, according to the Colorado Health Institute, Denver voters…passed a .25 percent sales tax (or 25 cents on a $100 purchase) under the Caring 4 Denver initiative, raising a new stream of money to treat mental health and addiction. It’s meant to take the response out of the hands of police and jails and focus on treatment centers and therapy…‘Mental health is extremely underfunded here in Denver, in Colorado and, frankly, nationwide,’ said state Representative Leslie Herod. ‘Everybody knows someone who is affected, and everyone says we have to do better.’” For the CityLab article, click here.

World Dignity Project Seeks Support for Malta Universal Mental Health Declaration

At The 2018 Universal Health and Mental Health Congress, held in Malta, the World Dignity Project published the Malta Universal Mental Health Declaration: “It affirms our belief that services and opportunities for people with mental illness, and their families and carers, can and should be better…Mental disorders rank among the most substantial causes of death worldwide. We fight for mental health and well-being for all, with equality of treatment and dignity in experience, as a basic human right.” For details and to consider signing the declaration, click here.

PA Launches First-in-Nation TA Center to Help Counties Reduce Number of People in Jail with Mental Health Conditions

The first technical assistance center to help reduce the number of people with mental health conditions in jails was recently opened in Philadelphia. “The Stepping Up Technical Assistance Center, established by the Pennsylvania Commission on Crime and Delinquency and administered by the CSG [Council of State Governments] Justice Center, will use in-person and distance-based trainings to improve county jail officials’ ability to identify mental illnesses among those admitted to their jails, as well as strengthen their data collection and establish a baseline of performance measures to track their progress toward getting people the treatment they need,” according to a CSG Justice Center press release. “‘This problem has been decades in the making, but it’s also solvable if we take a systems-wide approach,’ said John Wetzel, secretary of the state’s Department of Corrections….‘I’m proud that Pennsylvania is the first to launch something like this.’” To read more, click here. (For more articles about the criminal justice system, in which many individuals with mental health conditions are incarcerated, please see the Digest, below.)

Temple University Collaborative Newsletter Offers Great Community Inclusion Resources

The December 2018 edition of the monthly newsletter of the Temple University (TU) Collaborative on Community Inclusion offers links to a number of TU Collaborative resources published in 2018: “the widely requested ‘Jump-Starting Community Living and Participation’ toolkit; the ‘Leisure Education Toolkit for Parents with Mental Illnesses’; a manual on using social media to increase community living and participation; and strategies to support individuals to access and use bikeshare programs, just to name a few!” For the TU Collaborative newsletter, click here.

Psychology Today Suggests “Five Ways to Keep Loneliness from Turning into Depression”

A study by researchers at Sheffield Hallam University found that people “at high risk of depression have a chronic tendency to feel lonely and isolated. These feelings, in turn, can lead people to regard themselves in a particularly harsh and judgmental way…[T]he thoughts that you are unworthy become the breeding ground for the negative thoughts that are at the core of depression.” The researchers provided five suggestions: “Work on increasing your social support. Use mindfulness to reduce the tendency to ruminate over your shortcomings. Have a little self-compassion. Try self-affirming messages. Practice emotional suppression [—pushing the negative thoughts aside—] and reappraisal [—reframing the thoughts positively]…To sum up, becoming happier with your qualities rather than distressed about them can be an important step in conquering both depressive thoughts and the feeling that you’re not interacting with people to the extent that you would prefer.” For the article, click here.

The December 2018 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 December 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 “What Is Karl Taylor Dead? Our prisons are our mental wards. One fatal case in New York shows where that can lead,” click here. For “The Force Report: Five years. 72,609 documents. Every local police department in N.J. We built the most comprehensive statewide database of police use of force in the U.S.,” click here. For “‘On the Outside’: UC Berkeley professor’s 7-year study on mass incarceration and prisoner rehabilitation,” click here. For “Programs Help Incarcerated Moms Bond with Their Babies in Prison,” click here. For “Meek Mill: Prisoners Need a New Set of Rights. Like many who are now incarcerated, I was the victim of a miscarriage of justice. I got lucky, but because of dysfunctional, discriminatory rules, most don’t,” click here. For “More Than 4,000 Prisoners with Serious Mental Illness Are Held In Solitary Confinement, Study Finds,” click here. For “For New Jersey Jails, Suicides and Overdoses, But Little Oversight. By one count, New Jersey's county jails have the highest rate of deaths in custody of the 30 largest systems in the nation,” click here. For “’I Don’t Want to Shoot You, Brother.’ A shocking story of police and lethal force. Just not the one you might expect,” click here. For “Working Their Way Home from Prison: Brian L. Frank photographs young men in a California prison camp and on their journeys home to freedom,” click here. For “I been in hell all my life,” click here. For “Punishing Poverty: How Philly’s cash bail system does more harm than good / Opinion,” click here. For “There’s a Wave of New Prosecutors and They Mean Justice. These district attorneys should make jail the exception and eliminate cash bail,” click here. For “Almost half of U.S. adults have seen a family member jailed, study shows,” click here and click here. For “Has Plea Bargaining Distorted American Justice?” click here. For “How a Dubious Forensic Science Spread Like a Virus,” click here. For “Florida Is Just a Start: How the rest of the country can take the Sunshine State’s lead and embrace second-chance criminal justice reform,” click here. For “‘Justice’ Is Merriam-Webster’s Word of the Year, Beating out ‘Lodestar’ and ‘Nationalism,’” click here. For “How DC’s Mental Health Community Court Is Giving the Mentally Ill a More Hopeful Future,” click here. For “An Army Vet in Crisis. A Family Calls for Help. What Happened Next, Shouldn’t Have,” click here.


UK Researcher, Together with World Dignity Project, Seeks Your Input on “Patient Experience”

If you “have ever consulted a medical professional about a mental health or psychological issue,” you are invited to participate in “a study about the patient experience relating to mental health.” The researcher, Claire Brooks, writes: “The results of this study will be used to open up important discussions with Mental Health Professionals about how to create dignity in patient experience, relating to mental health. The study asks you to tell me about two patient experiences relating to mental health. You can tell your story in writing online or by posting a 2-3 minute video from your mobile phone. We will also ask for your own opinions on how the patient experience can ensure dignity...” For more information and/or to participate, click here.

Thanks, Global Mental Health Peer Network Newsletter, via Elizabeth R. Stone

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

Do You Hear Voices? OurVoicesRaised Wants Your Story!, “a collective of people who have found support through the Hearing Voices Movement,” is conducting “a research project investigating Hearing Voices Groups in the United States. We’re interested in gaining a better understanding of how Hearing Voices groups work and what essential elements of hearing voices groups make them effective for people who hear voices, see visions or have other unusual or extreme experiences…This project is committed to sharing its findings with the community that has generated them (and beyond), and to create opportunities for the hearing voices community to expand its work in new ways.” Gail Hornstein, a psychology professor at Mount Holyoke and author of Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness, is principal investigator. For more information and/or to participate, click here.

New 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

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. 6, December 2018. For content, reproduction or publication information, please contact Susan Rogers at (and please note that this is a new email address). Follow Susan on Twitter at @SusanRogersMH