January 24, 2018

In This Issue
Quote of the Week:

"I look forward to expanding NAMI-NYS's identity as a resource and community partner as well as informing the communities across the state on the unique education and support programs only NAMI can deliver."-Tina Lee, NAMI-NYS Community Education and Outreach Manager

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This week's edition of the NAMI-NYS E-News features several stories demonstrating the importance of the 2018 NAMI-NYS Legislative Action Agenda and we have again included a link to our analysis of the Governor's Executive Budget Proposal. This edition also highlights some of the amazing work being done by members of the NAMI-NYS Young Adult Network. You'll also find an update from NAMI on the changes to the Federal National Registry of Evidence-Based Programs & Practices which was mentioned in last week's edition. We also welcome the newest member of the NAMI-NYS team, Tina Lee.

As always, we want to know about the work you are doing.
Please email  Matthew@NAMINYS.org with details and pictures about your work. This way we can feature it in the E-News and print Newsletter. Showcasing your work will allow others to learn from you, and that's the best way we can grow together as an organization. 

Hope Starts With You!
NAMI-NYS Welcomes Newest Team Member Tina Lee

NAMI-NYS is thrilled to announce that Tina Lee has joined our staff as Community Education and Outreach Manager. In this role Tina will be responsible for overseeing our Signature Programs, broadening our outreach efforts and organizing our NAMIWalks NYS. Tina has been a longtime fixture of the NAMI-NYS family, serving as a program leader, a presenter and most recently the executive director of NAMI Mid-Hudson. 

"I am very excited for the opportunity to join NAMI on the state level and help us increase our ability to provide help and hope to as many individuals and families as possible," says Tina adding, "I look forward to expanding NAMI-NYS's identity as a resource and community partner, as well as informing communities across the state of the unique education and support programs only NAMI can deliver."

Join us in welcoming Tina

Click here to watch the Mental Health Now episode featuring Tina discussing how NAMI-NYS and Signature Programs helped her family. 

NAMI-NYS Offers Analysis of Governor's Budget Proposal and New Advocacy Resources

Last week, Governor Cuomo released his Executive Budget proposal. While there were some positive aspects, NAMI-NYS does have some concerns, most notably the woeful underfunding of the mental health housing programs, which is our top legislative priority.

Click here to read our analysis of the budget. 

NAMI-NYS has also added new advocacy resources to our website, which you can click here to view. 

We need your voice to help us tell legislators to address the gaps in the budget and pass legislation to advance our 2018 Advocacy Agenda.

Click here to register to participate in our Legislative Advocacy Day on March 7th. 

NAMI-NYS Included in Crain's Article on New York-Presbyterian Hospital Closing a Psychiatric Unit

Last week, Crain's Business ran an article on New York-Presbyterian Hospital's goal to close a 30-bed psychiatric unit on the third floor of Allen Hospital in the Inwood section of Manhattan to make way for modernized and improved maternity services.

As part of the article, NAMI-NYS's Associate Director for Public Affairs was interviewed to discuss the trend of reducing inpatient psychiatric hospital beds in both private and public hospitals.

Click here to read the article.

This article addresses two of the issues our 2018 Action Agenda, Housing and Community Reinvestment. Click here to view our sheet on Housing. Click here to view our sheet on Community Reinvestment.

NAMI-NYS Young Adult Network Member Eleni Gogos Talks About Treating Depression on Radio Show

Last week, the Rochester based radio program Connections With Even Dawson, focused on a controversial new book by British writer Johann Hari on treating depression, which argues that  antidepressants fail the vast majority of the time. The show points out that the writer "makes statistical claims that have already been essentially debunked. The medical community is concerned that Hari's claims could convince people to stop taking medication, so they're pushing back."

One of the people the show features to discuss antidepressants and treating depression is Eleni Gogos, an psychology major at Rochester Institute of Technology, who is also active in the NAMI-NYS Young Adult Network. Eleni speaks frankly about her bi-polar disorder, stating she had to take medication for a long time before getting a positive response. One of the reasons why she believes it took so long to find an effective medication was because her bi-polar was misdiagnosed as merely depression. She also states, "Taking medication alone is not going to be a fix...there are no magic pills. I believe medication and therapy together is the best way to get you to where you want to go."

Click here to listen to the program which also features  Eric Caine , M.D., former chair of the Department of Psychiatry at the University of Rochester, Christopher R. Noel , PharmD, BCPP, assistant professor of pharmacy practice at St. John Fisher College's Wegmans School of Pharmacy and Jordan Dube , a mental health activist.

Click here to read NAMI-NYS's Action Agenda sheet on Access to Appropriate Psychiatric Services and Medications.
Members of NAMI-NYS Young Adult Network Contribute to 
Stars A Collection of Poetry 

This week saw the release of Stars; A Collection of Poetry. It features works by NAMI New York State members Alexis Hill, Marissa Panè, Dianna Paige, Emily Frankl, Diana Viglucci, and Lindsay Wheeler.  Stars also features Danielle Fiorello Jobes and Kamilah Simone of This Is My Brave, and Jose Rosario of PeaceLove.

Author and curator Joseph Fusaro, who is a presenter for NAMI Westchester and provided the young adult voice of recovery at the 2017 What's Great in Our State event, had this to say of the project:
"Over the last three years I've met so many amazingly talented writers, and my honest opinion is that the only difference between their poetry and the poetry written by someone who is making a living in the industry is that that person who is making a living got published.  They had somebody that believed in them and invested in their talents." Joe continues, " I put together Stars because I believe in these writers.  I believe in them as people, and I know that no matter what they write, it will always be good because their work is authentic and from the heart. Our stories can also help others find the right words.  I am so grateful for groups like NAMI, This Is My Brave, and PeaceLove, all who have inspired me to write my books. Now it's my turn to pass this on."

NAMI-NYS congratulates all the talented writers who contributed to this project. Hope starts with you!

Click here to order a copy of Stars. 

NAMI-NYS Young Adult Member Lindsay Wheeler Hosts
Depressed Cake Shop Fundraiser for NAMI-NYS

NAMI NYS member Lindsay Wheeler (who was a presenter at the 2017 NAMI-NYS Education Conference) hosted a "pop-up" Depressed Cake Shop themed fundraising dinner on Sunday, January 12th. All proceeds will go to NAMI NYS. Depressed Cake Shops is a self-described "global COMMUNITY that promotes SELF CARE through the power of CREATIVITY and uses it to raise awareness and donations for mental health initiatives around the world." The event included dinner and mental illness themed baked goods, jewelry, and more. 

NAMI-NYS thanks Lindsay for continually projecting her advocacy voice and hosting this event to support NAMI-NYS.

Olivia Case to Host a Screening of 
Suicide the Ripple Effect  to Benefit NAMI-NYS

NAMI-NYS Young Adult Network member Olivia Case will be hosting a screening of Suicide The Ripple Effect Friday, April 20th at the Regal Theatre in Victor, NY.  The film chronicles Kevin Hines, who at age 19 attempted to take his life by jumping from the Golden Gate Bridge. Seventeen years later, he still struggles with many of the same symptoms that led him to attempt to take his life, but he is on a mission to use his story to help others stay alive.

Click here to learn more and register.

NAMI-NYS thanks Olivia for hosting this event, raising awareness and supporting NAMI-NYS.

NAMI Provides on Update on Federal National Registry of Evidence-Based Programs & Practices
In last week's E-News we featured a story about the federal government changing the National Registry of Evidence-Based Programs & Practices. Teri Brister, Ph.D., L.P.C., NAMI's Director of Information and Support, released the following:

Last Wednesday, January 10th, the media reported that SAMHSA (Substance Abuse & Mental Health Services Administration) was ending the NREPP (National Registry of Evidence-Based Programs & Practices). After headlines sparked backlash, SAMHSA hosted a conference call for stakeholders on Jan. 11th and issued a press statement.

During the conference call, Dr. Ellie McCance-Katz, Assistant Secretary for Mental Health & Substance Use, and Dr. Christopher Jones, newly-appointed director of SAMHSA's new National Mental Health and Substance Use Policy Laboratory (Policy Lab), discussed why the NREPP will be ending and what will replace it.

Why is the NREPP being discontinued?
 According to SAMHSA, the NREPP is outdated and difficult to navigate or search by key words, like schizophrenia. Furthermore, the evidence base for NREPP listings has been inconsistent and relies on individuals or organizations submitting entries. As a result, the NREPP does not provide an easy-to-search database that allows people to find evidence-based programs that are effective for their diagnosis or needs.

What will happen to support evidence-based programs?
Dr. Chris Jones will lead SAMHSA's efforts to identify and evaluate evidence-based practices. SAMHSA announced that the Policy Lab will develop a new website with treatment improvement protocols, toolkits, and other resources for meeting the spectrum of needs for individuals with serious mental illness and substance use disorders.
 In addition, SAMHSA's Policy Lab will implement regional technical assistance to train local providers on evidence-based practices. They noted that, currently, many providers are not using evidence-based practices.

What about programs that have already been designated as EBP by NREPP?
Programs that are already listed in the NREPP, including NAMI Family-to-Family, will continue to be listed as SAMHSA conducts its review of NREPP programs and practices. However, NREPP will not accept new additions to the registry, such as NAMI Basics and Ending the Silence, until new procedures are in place.

NAMI has reached out to SAMHSA and will continue a dialogue on incorporating NAMI's programs into SAMHSA's continuum of evidence-based programs and practices.

New York News
New York State Expanding Program to Help Individuals with Disabilities Find Employment

The New York State Employment First Commission, created by Governor Andrew M. Cuomo and chaired by the New York State Office of Mental Health, has announced new resources to help increase employment opportunities for individuals with disabilities. The new program, called the "Employment First Benefits Advisory System," will provide advice on financial assistance and work incentives for individuals with disabilities who are working or seeking work.

Dr. Ann Sullivan, Commissioner of the Office of Mental Health said, "Governor Cuomo's Employment First initiative has helped individuals with physical and behavioral health conditions find meaningful employment and make a valuable contribution to their community.  For a person with a disability, employment increases quality of life and self-esteem. For a business, hiring a person with a disability creates a more diverse workforce and increases the talent pool of job candidates.  Here in New York, we believe that it is essential to provide everyone with a fair opportunity to work and succeed."

Click here to learn more. 

New York State Office of Mental Health Releases New Report
on Assisted Outpatient Treatment

Graph from MentalIllnessPolicy.org

The New York State Office of Mental Health as released a 2017 year-end report on Kendra's Law, New York State's Assisted Outpatient Treatment program. 

In the report section OMH's statistics demonstrate that participation in AOT has reduced homelessness, hospitalization and incarceration. It also details how it has increased service participation, engagement in services and adherence to medication while improving social and community functioning and self care.

The report also features a half-hour video Kendra's Law-A Fresh Look where Dr. Lisa Dixon, the Director of the Center for Practice Innovations at the New York State Psychiatric Institute explains the program and its successes.

Click here to view the report. 
Click here to watch Kendra's Law-A Fresh Look
Click here to watch the NAMI-NYS Mental Health Now Episode on AOT featuring a woman who details how AOT is helping her recovery.

National News
Michael Phelps: "I am Extremely Thankful That I Did Not Take my Life"
Michael Phelps with NAMI CEO Mary Giliberti and Patrick Kennedy

Last week, Michael Phelps, the most decorated United States Olympic athlete, spoke at the Fourth Annual Kennedy Forum  Conference. 
Phelps discussed his struggles with severe depression, suicidal thoughts and how he used drugs to self-medicate. He also talked engaging in treatment stating "I remember going to treatment my very first day, I was shaking, shaking because I was nervous about the change that was coming up."

Phelps also talked about how " it's OK to not be OK and how mental illness has a stigma around it and that's something we still deal with every day," said Phelps. "I think people actually finally understand it is real. People are talking about it and I think this is the only way that it can change."

Click here to read more. 

Patrick Kennedy Calls the Work of the Federal Opioid Commission He Serves on "A Sham"

Kennedy Forum founder, former U.S. Rep Patrick Kennedy, also made news this week when he said that Congress has turned the work of the president's bi-partisan opioid commission ( of which Kennedy was one of six members appointed ) into a "charade" and a "sham." He further stated,  "everyone is willing to tolerate the intolerable -- and not do anything about it. I'm as cynical as I've ever been about this stuff."

Kennedy also believes that President Trump's declaration of the opioid epidemic as 90-day public health emergency in October has accomplished very little. "This and the administration's other efforts to address the epidemic are tantamount to reshuffling chairs on the Titanic," said Kennedy. "The emergency declaration has accomplished little because there's no funding behind it. You can't expect to stem the tide of a public health crisis that is claiming over 64,000 lives per year without putting your money where your mouth is."

Click here to read more.

Family of Mentally Ill Woman Found Outside Hospital in Gown, Socks Claims Facility Left Her to Die
In this issue we mentioned NAMI-NYS's Action Agenda items on Housing, Community Reinvestments and Accessing Appropriate Psychiatric Services and Medications. The importance of these issues are demonstrated in a case from Baltimore that is making headlines across the country. A 22-year-old woman with mental illness was dumped outside University of Maryland Medical Center Midtown Campus Hospital in just a gown and socks in the freezing cold.
Cheryl Chandler, the young woman's mother, blamed the hospital for failing to provide proper care to her daughter, who struggles with mental illness, calling the treatment "inhumane."

Click here to read more.

NIMH Intramural Researchers Develop Suicide Risk Screening Toolkit for Medical Settings

Researchers in the National Institute of Mental Health (NIMH)'s Division of Intramural Research Programs (IRP) developed and recently shared a free resource-the Ask Suicide-Screening Questions (ASQ) toolkit. This toolkit includes a set of screening questions that can help nurses or physicians in medical settings successfully identify youth at risk for suicide.

Early detection is a critical prevention strategy, according to Dr. Lisa M. Horowitz, Ph.D., M.P.H., an NIMH IRP clinician and researcher who led the development of the toolkit. Emergency departments, inpatient medical/surgical unit, and outpatient primary care and specialty clinics offer a promising opportunity for suicide screening and intervention.

"Many families use the emergency department as their sole contact in the health care system," said Dr. Horowitz. "Most people don't show up to the emergency department and say, 'I want to kill myself.' They show up with physical complaints and will most likely not discuss their suicidal thoughts unless they are asked directly. Nurses and physicians need to know what questions to ask to identify the patients at risk."

Click here to read more. 

Clinical Trial Recruitment

The primary purpose of this research study is to evaluate the safety and effectiveness of the oral drug AV-101 (an antagonist of the glycine receptor) versus placebo. The study aims to determine if this experimental drug has antidepressant effects and fewer side effects than other novel treatments for depression.
We are enrolling moderately depressed individuals between the ages of 18 and 65 with hard-to-treat major depressive disorder. This inpatient study lasts up to 14 weeks and procedures include a medication taper, taking the research drug, taking placebo and 4 brain imaging scans. Optional procedures include a lumbar puncture and catheter placement in the spine two times. After completing the study, participants receive short-term follow-up care at the NIH while transitioning back to a provider.
The study is conducted at theNIH Clinical Center in Bethesda, Maryland and enrolls eligible participants from across the USA. Travel arrangements are provided and costs are covered by NIMH (arrangements vary by distance). There is no cost to participate and compensation is provided.
To find out if you qualify,  send an email to moodresearch@mail.nih.gov ,
 or call 1-877-646-3644 (1-877-MIND-NIH [TTY: 1-866-411-1010].

Save the Dates

Click here to register.

January 23-Webinar on Conflict Resolution Resources for Peers
Do you know how to communicate effectively in conflicts and where to find resources for when conflicts escalate? This program introduces conflict resolution processes, skills you can use to manage conflicts, and resources you can access when you need help. We will specifically highlight conflicts related to mental health and roles peers can play in resolution. All participants will receive access to online resources they can use immediately following the presentation. Dan Berstein, MHS will be the presenter. Dan is the Vice Chair of the Diversity Committee of the American Bar Association's Section of Dispute Resolution. He developed the Dispute Resolution in Mental Health Initiative at the CUNY Dispute Resolution Center.

The webinar will be held on Tuesday, January 23 at 2pm. Click here to register. 

January 24- NAMI Westchester will be holding a Town Hall on Advocacy issues. Matthew Shapiro, NAMI-NYS Associate Director, Public Affairs will be presenting on NAMI-NYS's 2018 Advocacy Action Agenda and Michael Orth, Commissioner, Westchester County Department of Community Mental Health will be participating and answering questions about local mental health issues.
The event will be taking place from 6:30 to 8:30 p.m., at St. Vincent's Hospital, Conference Center 275 North Street, Harrison, NY 10528. It is free to attend but registration is required. Click here to register.

JANUARY  25  Capital District Family Services presents: An Overview of E.C.T. by Marcos Nieves, MD. CDPC Chief of Psychiatry. Thursday January 25th 5:00 p.m. - 7:30 p.m. CDPC Family resource Center. For more information or to register contact Frank Grecco Director of Family Services (518) 549-6816.

January 25 -Webinar on ABLE Accounts, 2018 promises to be another exciting year for ABLE. In addition to the expected launch of several more ABLE programs across the country, there will also be other significant changes to ABLE that have either already taken place as of January 1, 2018, or that will be implemented over the course of this year. The purpose of this webinar is to summarize and explain these changes. Specifically, the webinar will touch on:
  • 2018 Increased Annual Contribution Limit
  • Ability to Rollover Funds from a 529 College Savings Account into an ABLE Account
  • Additional Allowable Contributions by the Beneficiary as a Result of Employment
  • Access to the Retirement Savings Contributions Credit (Saver's Credit) 
Moderator Chris Rodriguez, Director, ABLE National Resource Center, will also be joined by a group of expert panelists, comprised of national disability-related policy experts, as well as leaders in the ABLE industry.

This webinar will take place Thursday, January 25th from 2:00-3:30 p.m. ET.
Click here to register

FEBRUARY 5- NAMI Staten Island Family-to-Family Refresher. Paulette and Keith will be teaching a Family-to-Family Refresher Course for all Family-to-Family graduates to Revisit and Review workshop handouts Reconnect with each other and meet other Family-to-Family grads. We will focus on Problem Solving and Communication skills and address additional resources such as crisis file and HIPPA. Join Paulette and Keith on Monday evening February 5th at Holy Rosary Parish 85 Jerome Ave. from 7 PM - 9:30 PM. Please contact us to register, as always, no charge. 

February 9th -MHA of Fulton and Montgomery Counties will be hosting Fun Fever-A Night of Stand Up Comedy, to benefit their new support group for families who have lost a loved one to opiates. The event will take place at the Country Club of Amsterdam, 130 Guy Park Ave. Amsterdam.

Click here for more information.

MARCH 13-CAIC Advocacy Day 2018
On any given day, as many as 4,000 people are locked in isolated confinement in New York's prisons and jails. This practice is ineffective, unsafe, and inhumane. It causes people detained in terrible conditions to deteriorate psychologically, physically, and also harms their families and communities. On March 13th 2018, people will come together from across the state in Albany to demand an end to this torture! Meet with legislators, learn, and rally to get the Humane Alternatives for Long-Term (HALT) Solitary Confinement Act [A. 3080/ S. 4784] passed.

Signature Programs

Saturdays, January 27th - March 3, 2018, 9:30 AM - 12 Noon. Rockland Community College (RCC) 145 College Road, Suffern, NY 10901. Co-Teachers: Chris Vanasse & Melinda Gonzalez

MARCH 1- Nami Queens Nassau Family-to- Family. Thursdays March 1-May 17 2018, 7:00 pm -9:30 pm at the Walk in Love for Jesus Church, 906 Newbridge Rd, North Bellmore NY 11710. To register: Please contact NAMI Queens Nassau at (516) 326-0797 or ( 718) 437-7284 or www.office@namiqn.org, or www.Namiqn.org, or www.facebook.com/namiqn. Co-leader Carol Ann Viccora ( 516) 221-6168 Elizabeth Janow.

MARCH 6- NAMI Queens Nassau Family-to-Family. Tuesdays March 6- May 23 2018, 4:00 p.m.-6:30 p.m. atThe LaGuardia Community College, ECLC 31-10, Room MB09, Thomson Ave.  LIC, NY 11101.To register: Please contact NAMI Queens Nassau at (516) 326-0797 or (718) 347-7284 or office@namiqn.org. or www.namiqn.org or ww.facebook.com/namiqn Co-Leaders: Sonya Evariste (718) 482-5217John Johnson.

MARCH 8-NAMI Rockland Family-to-Family. Thursdays, March 8, 2018 - May 24, 2018, 6:30 PM - 9:00 PM. Location: NAMI Rockland Rockland Psychiatric Center, 140 Old Orangeburg Road, Bldg. #57, 1st Floor Meeting Room, Orangeburg, NY 10962.Co-Teachers: Chris Vanasse & Marlene Becker. To register call NAMI Rockland at (845) 359-8787 or email: familysupport@namirockland.org

MARCH 17- Nami Queens Nassau Family-to -Family. Saturdays March 17 -June 2, 2018,1:00 -3:30 pm at The Greater Springfield Community Church, 177-06 129th Ave.  Jamaica, NY 11434 To register please contact NAMI Queens  Nassau at (516) 326-0797 or ( 718) 437-7284 or www.office@namiqn.org, or www.Namiqn.org, or www.facebook.com/namiqn, Co-leader Susan Gambler  (718) 297-0024 Sharon Ecke.

March 19- Nami Queens Nassau Family-to-Nassau. Mondays March 19-June 18, 2018, 6:30 pm -9:00 pm at Unitarian Universalist Congregation at Shelter Rock 48 Shelter Rock Road,Manhasset, NY 11030. To register: Please contact NAMI Queens Nassau at (516) 326-0797 or (718) 347-7284 or www.office@namiqn.org. or www.namiqn.org or www.facebook.com/namiqn. Co-Leaders:Ellen Ritz RN (516) 330-9778 or el.ritz@yahoo.com.

APRIL 9- NAMI Staten Island Family-to-Family. Mondays April 9th -June 25 from 7:00p.m. -9:30p.m. at the Holy Rosary Parish, 85 Jerome Ave., Staten Island, New York 10305.   Paulette and Keith will be teaching. Please contact us to register(718)477-1700.

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