The Key Update, Volume 13, Number 4 -- October 2016

Key Update, October 2016

Volume 13, Number 4

FDA Rules Allow Medical Device Makers to Keep Injuries Under Wraps

Manufacturers of medical devices must inform the U.S. Food and Drug Administration (FDA) whenever they discover that one of their products may have caused an injury. But, according to the Minneapolis Star Tribune, the FDA “has accepted late reports that cover hundreds of thousands of incidents, sometimes years after the fact, and has created a program that lets device makers keep the details out of view.” These “secret summaries” leave everyone in the dark, unless they go through a lengthy Freedom of Information Act process. In addition, allowing manufacturers to privately summarize large numbers of adverse events long after the deadline “could give them a way to hide safety issues,” according to the Star Tribune. “Whenever you have thousands of reports and you list them as one...that’s not transparency at all,” Madris Tomes, a former FDA official, told the newspaper. Tomes left the FDA to found a search engine, Device Events, that tracks device performance. “Physicians might change their minds if they knew how many problems there really were,” she said. For the article, click here. For information about a Citizens Petition filed by attorney Jonathan Emond in August 2016 to prevent the FDA from going through with its proposed reclassification of the device used to deliver electroconvulsive treatment (ECT) from Class III to Class II, click here.

Thanks, @JeanneLenzer1

Free Guide to Voting Rights for People with Psychiatric Disabilities

In time for Election Day, the Bazelon Center for Mental Health Law, the Autistic Self-Advocacy Network, the National Disability Rights Network and Schulte Roth and Zabel LLP are offering a free 55-page booklet entitled Vote. It’s Your Right. A Guide to the Voting Rights of People with Mental Disabilities. “The opportunity to participate in the democratic process is a fundamental right, yet many Americans with disabilities face barriers to exercising their rights as citizens. [This guide] explains how federal laws protect the voting rights of people with disabilities, with a chart of state laws affecting the voting rights of people with disabilities.” To download a free copy, click here.

The U.S. Takes Steps to Strengthen Parity in Insurance Coverage for Mental Health and Substance Use Conditions

On October 27, the federal Mental Health and Substance Use Disorder Parity Task Force, created by President Obama in March 2016, issued its final report, which includes a series of actions and recommendations to help ensure better implementation of parity, to enhance understanding of how parity works, and to ensure appropriate oversight and enforcement of parity protections. The actions include a $9.3 million allocation from the Centers for Medicare & Medicaid Services to help states enforce parity protections; the beta version of a new parity website to help people find the appropriate federal or state agency to help with their parity complaints and appeals; a guide from the Substance Abuse and Mental Health Services Administration and the Department of Labor to help people understand their rights; and other actions. For the government fact sheet, which includes a link to the full report, click here.

STAR Center Hosts a National Networking Call for People of Color on November 9 at 2 p.m. ET

The STAR Center has launched Equity and Inclusion in Leadership: A National Networking Call for People of Color “who are interested in increasing the number of people in organizational leadership roles who are African-American, Native American/American Indian/Alaskan Native, Latino/Hispanic or Asian/Pacific Islanders.” The next call is on November 9 at 2 p.m. ET; the calls will convene every month. The STAR Center writes: “Our hope is that this opportunity for people of color to network and support each other’s leadership efforts across the country and in our target states/regions will make a measurable and remarkable difference towards eliminating the leadership and health disparities we currently experience across the country.” To register, click here.

Could Peer-run Crisis Respites Take the Place of Inpatient Psychiatric Beds?

Hospital emergency rooms are a “mental health dumping ground,” according to a recent MedPageToday article reporting on an online survey of 1,716 emergency physicians nationwide. Rebecca Parker, MD, president of the American College of Emergency Physicians, told MedPageToday that “…almost one-quarter of our poll responded that they have patients waiting two to five days for a psychiatric bed.” But many people who have experienced psychiatric hospitalization believe that there is a much better alternative: peer-run crisis respites, which have a proven track record. “I believe we have a significant opportunity to promote peer-run respites as a response to the ugly problems that ERs currently face,” said Val Marsh, executive director of the National Coalition for Mental Health Recovery, whose membership includes numerous statewide peer-run organizations and others. For a partial list of studies demonstrating the effectiveness of peer-run crisis services, click here. For a Clearinghouse publication about peer-run crisis respites, click here. For the MedPage Today article, click here.

Peerlink NTAC Offers a Free Webinar on Estate Planning and Empowerment

This free one-hour webinar on Estate Planning and Empowerment, on November 17 at 2 p.m. ET, will show how every person can benefit from having an estate plan, said Peerlink National Technical Assistance Center (NTAC). “Without one,” Peerlink NTAC writes, “the laws of the state in which you live will determine who will care for your children if you die or become incapacitated, and who will get your stuff: not just money, but other belongings as well.” The webinar will show how an estate plan “ensures that your wishes will be heard and your choices followed, and how it often makes people feel empowered to take on other life challenges.” For more information and to register, click here.

Higher Rates of Substance Use and Mental Health Conditions Are Reported among LGBT Individuals

For the first time, a new report from the Substance Abuse and Mental Health Services Administration (SAMHSA) focuses on patterns of substance use and mental health conditions among adults of different sexual orientations. Overall, the report finds that adults who identify as lesbian, gay or bisexual have a higher prevalence of substance use and mental health conditions than adults who identified as heterosexual. However, lesbian, gay or bisexual adults were significantly more likely than heterosexual adults to receive needed treatment. “This report offers unprecedented insight into the behavioral health needs of lesbian, gay, and bisexual Americans — people critical to our community whose health concerns have often been overlooked,” said SAMHSA deputy principal administrator Kana Enomoto. “SAMHSA is working on efforts to reduce the impact of substance use and mental illness among LGBTQ Americans.” For more information and to download the free report, click here.

TU Collaborative Creates Manual on Welcoming Work Environments

The Temple University Collaborative on Community Inclusion has published a manual entitled Creating Welcoming Mental Health Work Environments: Recommendations for Fully Embracing and Supporting Clinical Staff with Mental Illnesses. “This document focuses on strategies for creating more welcoming work environments within mental health agencies for staff members with mental health conditions,” the TU Collaborative writes. “It provides readers — those who have been diagnosed with a mental health issue as well as agency CEOs, board members, supervisors, managers, and anyone else that might derive benefit from our suggestions — with a set of ideas and strategies that can be implemented to better support agency colleagues by creating and maintaining a positive, supportive, and welcoming work environment that enhances work life for all employees.” To download the free manual, click here.

Doors to Wellbeing Presents Webinar on Creating and Managing a Peer-run Business

As part of its monthly webinar series on the last Tuesday of every month, Doors to Wellbeing will present a free webinar on Creating and Managing a Peer-run Business on November 29 at 2 p.m. ET. The webinar promises to cover “the 3 W’s (why, what, where) you want to start a peer-run or owned business,” “how to start,” and how to “identify your best supporters and what’s in it for them.” To register, click here.

SAMHSA Publishes Bulletin on Selected Community-Level Approaches to Disaster Behavioral Health

This issue of SAMHSA’s Supplemental Research Bulletin “travels across the United States and through all stages of disaster preparedness, response, and recovery in examining community-level approaches to disaster behavioral health. While not meant to be comprehensive, the issue zeroes in on approaches that exemplify the benefits of a community-level approach, looking at research on how they are structured and how effective they are.” For more information and to download Stronger Together — Selected Community-Level Approaches to Disaster Behavioral Health, click here.

Recovery in the Bin Is a UK-Based User-led Group for People with a Psychiatric Diagnosis

Recovery in the Bin describes itself as “non-religious and unassociated/unaffiliated to any mental health organisation. We’d like to keep it that way.” Among the other statements on the group’s home page is the following: “We believe that there are core principles of ‘recovery’ that are worth saving, and that the colonisation of ‘recovery’ undermines those principles, which have hitherto championed autonomy and self-determination. These principles cannot be found in a one size fits all technique, or calibrated by an outcome measure.” The website’s home page, which includes a link to the group’s 20 key principles, is

Thanks, @AnneCooke14

Tumblr Moves Ahead with Its Campaign to Promote Mental Health Awareness

The social media platform Tumblr is inviting users to participate in the creation of a Community Quilt centered on mental health awareness, through a collaboration with ThriveNYC and Chirlane McCray, first lady of New York City. The project is part of its Post It Forward campaign, whose goal is to counter the prejudice associated with mental health conditions. Tumblr users can create and submit original artistic swatches and panels to be included in a quilt installation that will be on display in New York City and online here. Mental Health Weekly writes: “Each patch represents a creative expression around changing the conversation around mental health and an individual’s relationship with mental illness, whether battling it themselves or helping others with their struggles. For every patch a user submits, Tumblr will donate $1 to one of three different charities who support mental health, up to a total aggregate donation of $20,000. The user submitting the patch will be given an option of choosing which charity — the National Alliance on Mental Illness, The Trevor Project or The Steve Fund — their original panel will benefit.” To submit a panel, click here.

In the Fight Against Demonizing People with Mental Health Conditions at Halloween, Good News and Bad News

Determined advocacy recently won some battles in the fight to stop inflaming the prejudice associated with mental health conditions around Halloween. After a concerted effort by a variety of mental health stakeholders — including people with lived experience, family members, allies and friends (and thanks to all who responded to the action alert in the September 2016 Key Update!) — two North American theme park chains either cancelled their exhibits featuring "a psychiatric patient with demonic powers" (Cedar Fair Entertainment Co.) or swapped out “grunting inmates" and "maniacal inmates" for zombies (Six Flags). But this is a fight that never seems to be won: Spirit Halloween stores said that, for this year, they will continue to sell their Asylum Wall Kits (click here); and there is a lot of additional Halloween paraphernalia out there that is just as bad or worse (click here). Even New York City’s Metropolitan Museum of Art got into the act, with a replica of the Bates Hotel from Alfred Hitchcock’s movie Psycho (click here), on view from April 19, 2016, through Halloween. For media coverage of the successful advocacy initiatives, see Mental Illness Is a Health Condition, Not Halloween Entertainment (click here), Mental Illness Is Not a Horror Show (click here), and Powerful Advocacy Has Shut Down Halloween “Attractions” That Ramp Up Prejudice (click here).

Alternatives 2017 to Be Held in Boston August 18-21! Save the Date!

The National Empowerment Center (NEC) will organize and host the 2017 Alternatives Conference at the Boston Park Plaza from Friday, August 18, through Monday, August 21, 2017. “The Alternatives Conference 2017 website is in development and will have further information at,” NEC writes. “Announcements will be sent when further information is available, which will include the Call for Presentations, an online submission link, hotel reservation information, and a direct link to online room reservations.” The Alternatives conference is sponsored in part by SAMHSA.

National Technical Assistance and Networking Teleconferences Are on Hiatus for Now

The National Mental Health Consumers’ Self-Help Clearinghouse is no longer operating under a grant from the Substance Abuse and Mental Health Services Administration. Although we are keeping our doors open – including publishing our monthly e-newsletter, the Key Update – we are suspending our monthly national technical assistance and networking calls for the time being. We will keep you posted.

Consumer-Driven Services Directory

The Clearinghouse welcomes all programs in which consumers play a significant role in leadership and operation to apply for inclusion in its Directory of Consumer-Driven Services. The directory, accessible at, is searchable by location, type of organization, and targeted clientele, and serves as a free resource for consumers, program administrators and researchers. Apply online at, via fax at 215.636.6312, or by phone at 800.553.4KEY (4539). To receive an application by mail, write to or Susan Rogers, Clearinghouse, 1211 Chestnut Street, Suite 1100, Philadelphia, PA 19107.

About The Key Update

The Key Update is the free monthly e-newsletter of the National Mental Health Consumers’ Self-Help Clearinghouse. Volume 13, No. 4, October 2016, To subscribe, please send a message to: subscribe thekey. To unsubscribe, please send a message to: unsubscribe thekey. For content, reproduction or publication information, please contact Susan Rogers at or 800.553.4539 x3812, 267.507.3812 (direct). Follow Susan on Twitter at @SusanRogersMH