March 21, 2018

In This Issue
Quote of the Week:

"When I became an advocate I realized that is a family affair for the one in four of us. One in four is touched in some way by mental illness. So, it became obvious to me that we have to talk about it." -Actress Glenn Close

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This edition of the NAMI-NYS E-News comes to you on this first full day of spring. We hope the change in seasons will be a reminder that together we must spring to action to make our voices heard on the 2018 NAMI-NYS Action Agenda. Below you will find the latest on NAMI-NYS's advocacy activities as well as tools for you to project your advocacy voice.

You will also find information about the 2018 What's Great in Our State event, a new series of theatrical performances produced by NAMI Sullivan, opportunities to participate in webinars from NAMI and NYS-OMH, NBA players discussing mental illness, CBS Sunday Morning's "Mind Matters" episode and stories on the ongoing debate over involuntary commitment.   

As always, we want to know about  the work you are doing.
Please email 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 Wit
h You!
NAMI-NYS Continues our Advocacy Push as the 
State Negotiates the Budget
Your Voice is Needed! 

Last week found NAMI-NYS once again busy advocating for key elements of our 2018 Action Agenda. First, we want to thank all of those who participated in the two advocacy briefing calls that took place last week. 

Last Tuesday, Associate Director, Public Affairs Matthew Shapiro led an advocacy team for the advocacy day for the Campaign Against Isolated Confinement. Matthew and his team met with Assemblyman Jeffrion Aubrey (sponsor of the HALT bill), Assembly Mental Health Chair Aileen Gunther and the offices of Senate Insurance Chair James Seward (where NAMI-NYS also detailed our concerns about the role insurance plans play in keeping people from appropriate mental health services) and Senator Michael Ranzenhofer.

The following day, Matthew presented on Crisis Intervention Teams at the Mental Health Association of New York State's advocacy day and participated in a rally in the Capitol on the need to fund a school mental health resource center.

Both CIT and reforming the use of solitary confinement are key components of NAMI-NYS's Action Agenda priorities on Improving the Mental Illness-Criminal Justice Interface.

Last week also found NAMI-NYS discussing the importance of prescriber prevails to the state Medicaid program. NAMI-NYS delivered two letters about prescriber prevails. The first was co-signed by our board and affiliate leaders, the second was sent jointly with the  Mental Health Association of New York State (MHANYS) and the New York Association on Psychiatric Rehabilitative Services (NYAPRS).

Click here to view the letters from our board and affiliate leaders. 

Click here to view the precriber prevails letter from NAMI-NYS, MHANYS and NYAPRS.

Our advocacy voice is resonating in the legislature. One of our main asks has been  calling for an investment of $1.5 million in the legislative one-house bills to  create a statewide behavioral health ombudsman to monitor behavioral health parity violations.  We are excited to inform you that both one-house bills contain this investment. Another of our key asks has been an additional investment in mental health housing and the Senate one-house bill contains such an investment (though at a smaller number than what we are calling for).

Make Your Voice Heard on Key Budget Issues

While we are making headway on our key budget asks, we need your help to keep the pressure on our state leaders to ensure they act for mental health. You can make your voice heard by taking a few minutes to send a pre-written letter about housing and make phone calls to key decision makers.

Click here to send a pre-written letter to leaders regarding mental health housing with wraparound services.

Click here to view updated scripts for phone calls. 

TODAY at 11am

The BRING IT HOME Campaign will be holding an important rally on the third floor of the Capitol on  Wednesday, March 21 .  Attendance is HIGHLY encouraged, and we are hoping to get as many people as possible to gather on the third floor steps outside of the Assembly Chamber at  11:00am.   

Email for more information.

Watch the Latest Episode of Mental Health Now
and Learn More About Mental Health Parity

The new episode of the NAMI-NYS produced TV show Mental Health Now discusses mental health parity and features Tracie Gardner, Associate Director of the Legal Action Center, and Andrew Malekoff, Executive Director and CEO of the North Shore Child and Family Guidance Center. Finding mental health providers who accept private insurance plans is becoming a challenge for far too many, which is why parity and network adequacy is one of the most important issues NAMI-NYS is advocating for. 
Click here to watch the episode

Click here to view the NAMI-NYS Action Agenda sheet on Access to Appropriate Mental Health Care and Services.
Both the North Shore Child and Family Guidance Center and the Legal Action Center have been leaders in informing the public about mental health parity and network adequacy issues. 
Earlier this year, the North Shore Child and Family Guidance Center released the Project Access report. The Report provides the results of a year-long study in which approximately 650 Long Islanders were surveyed about their experiences and frustrations in trying to obtain help.
Click here to view the report.

Click here to read the Long Island Weekly article written by Andrew Malekoff, "The Struggle for Mental Health 
Legal Action Center is leading the Parity@10 campaign in New York State and they have produced  Health Insurance for Addiction and Mental Health Care: A Guide to the Federal Parity Law. The Guide explains patients' and providers' rights to insurance coverage for substance use and psychiatric disorders. Though the guide pertains to New York State, it can benefit people from throughout the country.

Click here to view the guide.

2018 What's Great in Our State: A Celebration of 
Children's Mental Health Awareness 
Announces  Keynote and Young Adult 
Voice of Recovery Presenters

NAMI-NYS is proud to once again serve on the steering committee for What's Great in Our State: A Forum to Celebrate Children's Mental Health. The event, which will be taking place on Tuesday, May 8th, honors people and programs that are addressing children's mental health issues. The event will also feature both a keynote and a young adult voice of recovery presentation. Both presenters should be familiar to our readers.

The keynote presentation will be given by Peter Gray, Ph.D. 
Dr. Gray is a research professor of psychology at Boston College who has conducted and published research in neuroendocrinology, developmental psychology, anthropology, and education. His research now focuses on the role of play in human evolution and how children educate themselves, through play and exploration, when they are free to do so. He has expanded on these ideas in his book,  Free to Learn: Why Unleashing the Instinct to Play Will Make Our Children Happier, More Self-Reliant, and Better Students for Life.  Dr. Gray was a presenter at the 2017 NAMI-NYS Education Conference.

The young adult voice of recovery presentation will be delivered by Dianna Paige.  Dianna is currently a student at Hobart and William Smith College and an active member of the NAMI-NYS Young Adult Network. She has been a passionate mental health advocate dedicated to raising awareness among her peers. Dianna has been a leader on mental health literacy since she was a high school student. During her time in high school, Dianna created a presentation and video to talk to students about depression and other mental health issues prevalent among adolescents. When she was 19 years old, Dianna filmed an acclaimed TEDx Talk "I am Depressed" where she  shares openly about her personal struggles with mental illness and covers topics including depression, anxiety, and suicide.

Click here to learn more and register to attend this free event. 

This is the final week to submit a nominee. The deadline for submissions is Monday, March 26th. We encourage our readers to make a nomination. Click here to read the nomination cover letter and click here for a nomination form. Please email Susan Perkins regarding questions about a nomination. 

NAMI Sullivan County to Produce a Series of Performances 
of Every Brilliant Thing

In the coming weeks, NAMI Sullivan County will be producing performances of the play Every Brilliant Thing directed and performed by NAMI Sullivan executive director Lori Schneider. A funny and moving play, Every Brilliant Thing by Duncan Macmillan with Jonny Donahoe is a powerful piece of theater about Depression and the lengths we will go to for those we love. NAMI Sullivan County will be producing a limited engagement in various venues around the county. 

Its premiere local performance will be co-sponsored by SUNY Sullivan and held on the Loch Sheldrake campus on April 15th.Subsequent performances will be held on May 1st to kick off Mental Health Month at the Bethel Woods Center for the Arts and then as a joint fundraiser for NAMI Sullivan and Orange Counties on May 6th at the Thrall Library in Middletown. Another Sullivan County performance is slated for late July, details to be announced, pending rights

Click here for more info. 

NAMI-NYS Presents at South Glens Falls School District's
Parents University

On Thursday evening, March 15th, NAMI-NYS gave a presentation on how to recognize potential mental health issues in children and adolescents as part of the South Glens Falls School District's Parents University program. The presentation detailed warning signs, how to intervene and information about NAMI programs. The school district broadcasted the presentation and it is available to watch by clicking here

Click here to read our Action Agenda sheet on Children's Mental Health.

NAMI-NYS and NAMI Rensselaer Participate in 
Albany County CIT Presentation

On Friday, March 16th Albany County held a CIT training for police, correction and SUNY campus officers from throughout the county as well as Oneonta. NAMI-NYS's Matthew Shapiro and NAMI Rensselaer's Christine Robinson-Cooley both presented as part of the family and consumer panel. 

NAMI Rochester Participates in Connections Radio Program

The March 12th episode of the Rochester Radio program Connections discussed the response from two NBA players who spoke publicly about their mental illness (you can read more about the players in the National News section) and how within days, each player had heard from thousands of fans who decided to finally open up about their own challenges with mental health. The episode of the show focuses on stigma, opening up, and the difficulty that comes with hiding mental health issues. Among those features on the show is Kristina Mossgraber, Events Coordinator and Walk Manager for NAMI Rochester.

Click here to listen.
Join NAMI for a SAMHSA's Sponsored Webinar About The HIPAA Privacy Rule
Next Wednesday, March 28th, from 2:30-4, Ron Honberg, J.D., NAMI's Senior Policy Advisor, will be leading a   Substance Abuse and Mental Health Services Administration (SAMHSA) Sponsored Webinar, "Myths and Reality: The HIPAA Privacy Rule."

HIPAA is a privacy rule intended to safeguard private health information, but is often misinterpreted and misapplied. With better understanding of flexibility within HIPAA, mental health stakeholders can promote both individuals' privacy rights and appropriate inclusion of families/partners and providers.

This webinar will feature various scenarios that illustrate both commonly-held misconceptions about HIPAA, as well as more complex issues. It will address such topics as communication among health providers, disclosures to caregivers, rights of people to access information about their own treatment, special rules pertaining to mental health and substance use information, and other important topics.

Click here to learn more and register. 
New York News
Nakesha Williams Died Homeless on a Manhattan Street. Should She Have Been Forced Into Treatment?

The New York Times recently published a heartbreaking story about a standout student at Williams College who later developed mental problems and ended up homeless. The woman, Nakesha Williams, died in 2016 at age 46 after turning down many offers of help over the years and despite extraordinary efforts made by outreach workers and friends .

The homeless rates in New York continue to rise and many of those who are homeless have psychiatric issues. Many NAMI-NYS families have had the difficult experience of being unable to intervene for loved ones who are exhibiting the symptoms of mental illness if they refuse treatment. If individuals do not pose a threat to themselves or others they cannot be forced into help or treatment no matter how evident the need for care is.

Click here to read more. 

NYS-OMH to Host FREE two-Day Seminar on how to Quickly get Approval for SSI, SSDI, Medicaid, and 
Other Entitlement Programs

John B. Allen Jr, the New York State Office of Mental Health's Special Assistant to the Commissioner, will lead a two-day seminar about entitlement programs on April 5-6th. Many people with disabilities wait years before they are determined to be eligible for benefits.
This free OMH seminar will show you that, with the correct documentation, it should take no more than 90 days to get approved.  

The seminar will be conducted in Geneva, NY, but people from throughout the state can participate remotely through WebEx.

Prevention, Access, Self-Empowerment and Support (P.A.S.S.) Program Now Accepting Applications
P.A.S.S. is an innovative, curriculum-based, statewide prevention program that works with teens who experience challenges in their daily lives, or whose parents are seriously and persistently mentally ill. Participants report having emotional issues revolving around building and maintaining relationships, anger management, feelings of frustration, distraction, lack of self-control, poor decision making, inability to finish tasks and an overall lack of focus. The therapist data indicates that some of the participants have serious challenges with aggressive, suicidal and/or self-destructive behavior and substance abuse.
P.A.S.S. is sponsored by the Monroe and Orleans County Offices of Mental Health. The program is managed by Coordinated Care Services, Inc. (CCSI) a unique non-profit management services organization. The primary source of funding for this program is the New York State Office of Mental Health Reinvestment dollars. This multicultural initiative has been in existence since 1996 and has documented positive changes for participants.
Click here to learn more and complete an application.

National News
This Week's CBS News Sunday Morning Focuses
On Mind Matters

The March 18th episode of the CBS News program Sunday Morning focused entirely on issues around the brain and neuroscience. Three segments discussed mental illness and mental health issues.

Click here to watch a story where actress Glenn Close, her sister Jesse and Jesse's son Caleb discuss Jesse and Caleb's battle with mental illness and how it inspired Glenn to speak up about mental illness and start the organization Bring Change 2 Mind to raise awareness. 

Click here to watch the story "A Brush with Madness" which chronicles the connection between mental illness and creativity. This article detail Vincent Van Gough's struggle with mental illness and how it is reflected in his art. Also profiled is singer  Michael Angelakos of the band Passion Pit, who has serious bi-polar disorder and has gone through ECT treatment. 

Click here to watch the story "A Wonder Drug Once Again?" This story examines the use of low-dose psychedelic drugs such as LSD and psilocybin to treat psychiatric disorders. The story interviews Dr. Tony Bossis of New York University, who discusses his clinical trials in this area.   

NBA Players Discuss Their Mental Health Issues 

Recently NBA star player DeMar DeRozan of the Toronto Raptors began discussing his battles with depression and anxiety. Cleveland Cavilers player Kevin Love was one of the many people that saw DeRozan speak out about his mental health, and it inspired him to speak out about his own. Love wrote an article in the Player's Tribune detailing how in November, he experienced a panic attack during a game which led him to be hospitalized.
Click here to learn more about DeMar DeRozan.
Click here to read Kevin Love's article.

United States Attorney General Jeff Sessions Says Communities Need 'Involuntary Commitment' Option for Mentally Ill
On Thursday, March 15th, Attorney General Jeff Sessions told a meeting of international police chiefs that communities need the option of "involuntary commitment" for people  who suffer from mental illnesses as a crime-fighting tool.

"We have got to finally make progress on this seemingly intractable problem. Local communities supported by the federal government have to have a system that actually delivers valuable information, with involuntary commitment options for those who are mentally ill and dangerous. Some of these people need to be in treatment facilities, not in jails," Sessions said

Click here to read more.

NIMH Update

Click here to read the latest Update from NIMH. 

New Clinical Trial Now Seeking Recruits
Depression and Brain Function

(Inpatient and/or Outpatient study: 8 weeks, and 3 once-a-month follow up visits or phone calls.) This depression research study tests the effects of the combination of transcranial magnetic stimulation (TMS) and psychotherapy on brain function. Participation includes research evaluations, brain scans, and  active TMS and psychotherapy, or inactive TMS and psychotherapy .  

Recruiting ages 18-65 with major depressive disorder, who are free of other serious medical conditions. If you are currently taking anti-depressants, you may still be eligible. (17-M-0147). Click here for more information or Call: 1-877-MIND-NIH, (1-877-646-3644), TTY: 1-877-411-1010, or email


Save the Date

MARCH 20-Capital District Psychiatric Center Family Services Presents an Overview of A.O.T. Guidelines presented by Cherie Seidewand, Mental Health Program Specialist Hudson River Field Office - O.M.H. Tuesday, March 20, 2018 from 5:00 pm - 7:30 pm at the CDPC Family Resource Center 75 New Scotland Avenue Albany, NY 12208 (518) 549-6000
There will be time for Questions and Answers as well as support services after the presentation.  For more information or to register contact: Frank Greco, Director of Family Services (518) 549-6816

APRIL 3- Capital District Psychiatric Center Family Services Presents: An Overview of Talk Saves Lives Sponsored by American Foundation Suicide Prevention (A.F.S.P.) presented by Holly Briggs, CDPC Social Worker. Tuesday, April 3, 2018 from 5:00 pm - 7:30 pm in the CDPC Family Resource Center, 75 New Scotland Ave. Albany, NY. For more information or to register contact: Frank Greco, Director of Family Services (518) 549-6816.

APRIL 19-20th-NYAPRS will be hosting their 14th annual Executive Seminar-New Strategies and Partnerships to Support the Most Challenged New Yorkers. The conference will feature presentations by Elinore McCance-Katz, HHS Assistant Secretary for Mental Health and Substance Use and renowned author and family advocate Pete Earley. NAMI-NYS will be exhibiting at the event and we hope you can join us.

Click here to learn more. 

April 20th- NAMI-NYS Young Adult Network member Olivia Case will be hosting a screening of Suicide The Ripple Effect 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. The screening will benefit NAMI-NYS

Click here to learn more and register. 

MAY 1- Capital District Psychiatric Center Family Services Presents: An Overview of Mental Health Services in Rensselaer County by Kirstein DonVito, Rensselaer County Department of Mental Health Deputy Commissioner - Clinical AOT Coordinator and SPOA Tuesday, May 1 2018 from 5:00 pm - 7:30 pm in the CDPC Family Resource Center, 75 New Scotland Ave. Albany, NY. For more information or to register contact: Frank Greco, Director of Family Services (518) 549-6816.
Signature Programs
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 or or Co-Leaders:Ellen Ritz RN (516) 330-9778 or

MARCH 20- NAMI-NYC METRO Peer to Peer. Tuesdays March 20 - June 5 2018, from 12 p.m. to 2 p.m., at the NAMI-NYC Metro Office, 505 Eighth Ave. @ 35th St., Suite 1103, New York, New York. Co-teachers: Alice Morris and Ida Shaw-Forbes. To register for upcoming classes, contact the helpline at 212-684-3264.   

MARCH 28- NAMI Huntington Family-to-Family. Wednesdays, March 28th-June 13th  7:00p.m. -9:00 p.m.  at the Northport VA Medical Center, Building 200-A1-5, 79 Middleville Rd. , Northport, NY 11768. To register contact: Jill Ryan 516-695-0389(, Barry Goggin 631-261-4400 Ext 2785 (, Jane Dovi  631-835-2277 (

APRIL 3-NAMI Orange County Family-to-Family .Tuesdays, April 3rd - June 19th , 6:30 p.m. - 9:00 p.m. at the First Presbyterian Church, 33 Park Place, Goshen, 10924.To register contact NAMI Orange County  / (845)956-6264.

APRIL 5- NAMI Cattaraugus Family-to-Family. Thursdays April 5th - June 21st from 6:00p.m. - 8:30p.m. at the Directions In Independent Living, 512 West State Street, Olean, NY 14760. To  Register Contact Theresa Klice (716) 373-4602. Program Leaders: Theresa Klice and Lenny Ligouri

APRIL 5- NAMI Sullivan Family-to-Family. Thursdays April 5th - June 14th from 6:00 p.m.-8:30 p.m. at 20 Crystal St., Monticello, NY 12701. To register contact ( 845)794-1029 / Co teachers Lori Schneider and Mary Moore.  

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.

APRIL 9- NAMI Putnam County Family to Family. Mondays April 9th - June 25th from 6:00 p.m. - 8:00 p.m. at the Kent Public Library 17 Sybils Crossing, Carmel Hamlet, NY 10512. To register please contact William or Wanda Crowley (914) 522-3812/ 

APRIL 12-NAMI Saratoga/Schenectady Family to Family. Thursday's April 12 through June 28 from 6:15 pm to 8:45 pm at Four Winds Hospital 30 Crescent Avenue, Saratoga Springs, NY. Call to register Dotte Coon 518 429-5047 e-mail Or Cindy Seacord 518 374-8071 e-mail

APRIL 17- NAMI Columbia County Family to Family. Tuesdays April 17th - June 26th from 6:00 p.m. - 8:00 p.m. at the Niverville-Chatham United Methodist Church, 28 Church St., Niverville, NY 12130. To register contact Heather Llyod (914) 629-5299/ or Nicole Corey (518) 931-4170/ 

MAY 8- NAMI Orange County Family-to-Family. Tuesdays, May 8th -July 24th  , 6:30 p.m. - 9:00 p.m.  at the St. Francis of Assisi Catholic Church, 145 Benkard Ave., Newburgh, NY 12550. To register contact NAMI Orange County  / (845)956-6264.

JUNE 3- NAMI Orange County Basics. Sundays, June 3rd -July 8th , 6:30 p.m. - 9:00 p.m. at the First Presbyterian Church, 33 Park Place, Goshen, 10924. To register contact NAMI Orange County  / (845)956-6264.

Please contact your local affiliate program le aders for more information and how to enroll.
NAMI Family-to-Family
April 6th -8th
Location: NAMI-NYS Office
NAMI Homefront
April 20th -22nd
 Location: NAMI-NYS Office

NAMI Basics
 June 2nd-3rd
 Location: NAMI-NYS Office

NAMI Peer-to-Peer
June 15th-17th
Location: NAMI-NYS Office

NAMI Family Support Group and NAMI Connections
 June 22nd -24th
Location: NAMI-NYS Office

NAMI-NYS | 99 Pine Street Suite 105| Albany, New York 12207 | (518) 462-2000