July 25, 2017

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This week's edition of the NAMI-NYS E-News features a link to the advocacy video NAMI-NYS filmed with Congressman Paul Tonko. The edition also continues to explore issues relating to National Minority Mental Health Awareness Month, and this week features two articles on mental health in the African-American community. You will also find new information on New York's Paid Family Leave Program, a guide to talking to loved ones about mental health and a summary of the NIMH Outreach Partner Meeting. 


The Senate will be voting on healthcare later today. What they will actually be voting on however is a bit of a mystery. Click here to read the latest from CNN this morning.
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 Records Advocacy Video with 
Congressman Paul Tonko
While Attending We Work for Health Summit

NAMI-NYS's Matthew Shapiro with (clockwise from top) Congressman Paul Tonko (NY-20), Andrew Sperling, NAMI's  Director of Legislative Advocacy, Congressman G.K. Butterfield (NC-1), Congressman John Katko (NY-24) along with Kaitlyn MacLeod and Jaime Venditi from New York Health Works, and Jim Messina, former Deputy White House Chief of Staff and one of the architects of the Affordable Care Act.

This past week was eventful in Washington D.C. for federal health care as the Senate did not produce enough votes to advance their proposed Better Care Reconciliation Act (BCRA), and NAMI-NYS was in the middle of the health care talks in the Capitol. NAMI-NYS Associate Director for Public Affairs Matthew Shapiro participated in the We Work for Health summit which saw him meeting with members of the New York Congressional delegation and other federal leaders.

The highlight was participating in an advocacy video with Congressman Paul Tonko (NY-20). In the video, Congressman Tonko and Matthew discuss how the BCRA would negatively impact mental health care as well as how investments must be made in research, housing with wrap-around services, first episode psychosis programs and ensuring the availability of mental health services in the community. Click here to watch the video.

The We Work for Health summit brought issues of patient access to Capitol Hill. Two of the main issues discussed were repealing the Independent Payment Advisory Board (IPAB) and reauthorizing the Prescription Drug User Fee Act (PDUFA).

IPAB is an element of the Affordable Care Act (ACA), which needs to be reformed, as it is an appointed board tasked with reducing Medicare costs. While costs are a legitimate concern, the argument is that the board should consist of elected officials who are accountable to constituents. Click here to learn more. Since 1992, the Prescription Drug User Fee Act (PDUFA) has provided patients timely access to more than 1,500 new drugs and biologics, including treatments for cancer, rare diseases, cardiovascular conditions, neurological conditions, and infectious diseases. Click here to learn more. 

NAMI-NYS thanks New York Health Works for inviting us to participate in the summit and providing a platform to project our advocacy voice. 

NAMI-NYS Holds Second Bowling Fundraiser
Volunteer and NAMI Rensselaer member Mary Beth Honsinger, NAMI Orange president and  NAMI-NYS Board member Dhanue Sannesy and Information and Resource Helpline Coordinator Christine Rickeman at NAMI-NYS Bowling fundraiser.

On Friday July 21st, NAMI-NYS held a bowling fundraiser in support of the upcoming NAMIWalks event on September 23rd. Attendees had a great time and prizes were awarded to the high scorers. It's not too late to start a team or support a team member.  All proceeds from the walk go towards supporting NAMI-NYS education, support and advocacy efforts all over the state of New York.

NAMI-NYS Holds Regional Family-to-Family Training in Syracuse

NAMI-NYS wants to thank all who participated in our regional Family-to-Family training on July 14-16 in Syracuse. We want to especially express our gratitude to the t rainers, Ann Canastra and Cheri Caiella. We look forward to having all of those trained begin providing education and support in their communities. 

NAMI-NYS Congratulates Judy Watt and 
Donna Leigh Estes on their Appointments to the 
Board of Visitors

NAMI-NYS would like to congratulate our president, Judy Watt, MSRN on her reappointment to the Rochester Psychiatric Center's Board of Visitors. We also congratulate NAMI Rochester's Donna Leigh-Estes on being appointed to her first term. The Board of Visitors are appointed by the Governor to provide the family perspective on care at state hospitals. 

Randi Silverman Honored by International Conference on Bipolar Disorder

Randi Silverman, a member of NAMI Westchester who received the 2016 NAMI-NYS Media Award for her film No Letting Go, was presented with the Mogen Schou Award for Advocacy and Public Service from the International Conference on Bipolar Disorder. 
NAMI to Participate in The Humane Imperative: Ending Solitary Confinement Webinar

Reforming the use of solitary confinement has long been a key element of NAMI-NYS's advocacy priority to improve the mental illness-criminal justice interface. This Thursday, NAMI's Ron Honberg will be participating in SAMHSA sponsored webinar on the topic.

Click here to learn more and register. 

The 2017 NAMI-NYS Education Conference will have a session on reforming the use of and alternatives to solitary confinement. 

You Can't "Pray Away" A Mental Health Condition

In a recent NAMI blog on Minority Mental Health Awareness Month, Fonda Bryant reflects on her suicide attempt due to depression more than 20 years ago. She explains that, "Being a black female and growing up in the 1960's where black people had way more to deal with than mental health conditions, mental health was never really discussed."

She continues, "Fast forward to 2017, and it's mind-boggling just how far behind the African-American culture is when it comes to mental health and suicide."

She then offers deeper explanations on three of the reasons mental health is not properly discussed in the culture. Click here to read more.

New York News
New York State Announces Regulations for 
Paid Family Leave Program

Last week, Governor Andrew Cuomo announced that the state has adopted regulations implementing New York's landmark Paid Family Leave program. These regulations outline the responsibilities of employers and insurance carriers in implementing the most comprehensive paid family leave program in the nation.

Starting January 1, 2018, Paid Family Leave will provide employees with wage replacement and job protection to help them bond with a child, care for a close relative with a serious health condition (including psychiatric disorders), or help relieve family pressures when someone is deployed abroad on active military service. Employees are also entitled to be reinstated to their jobs when their leave ends and to the continuation of their health insurance during their leave.

"There is a time in everyone's lives where being there for a loved one in need is more important than anything and - finally - New Yorkers will no longer have to choose between losing their job and being a decent human being," Governor Cuomo said. "By enacting and implementing the strongest paid family leave program in the nation, this administration is taking yet another step forward to providing economic justice to all New Yorkers" 

Click here to visit the Paid Family Leave site for more information.

The 2017 NAMI-NYS Education Conference will have a session on Paid Family Leave and other NYS Initiatives affecting individuals and families impacted by mental health issues. 

The State Drops Plan to Close Mid-Hudson Forensic Psychiatric Center

State officials confirm they have abandoned plans to close the Mid-Hudson Forensic Psychiatric Center, a state-run hospital in the Town of Goshen that was slated for closure in 2013 as part of a plan to reduce the number of state psychiatric centers to 15 from 24.

NAMI-NYS has established a presence at the forensic hospital which treats 278 patients , who have been admitted by court order after being deemed "incompetent to stand trial" or "not responsible by reason of mental disease or defect." The hospital has 545 full-time employees. Our NAMI Orange County affiliate has an office at the facility with family resources and our Criminal Justice Chair, Jayette Lansbury gives an annual presentation at the facility for families.

Schizophrenia Study Looking for Family Input 

NAMI-NYS encourages our readers to participate in a quick survey to be used as part of a research study on the efficacy and feasibility of family-based therapy to treat schizophrenia. The study is being conducted by Dr. Yulia Landa at the Icahn School of Medicine at Mount Sinai. The survey is designed to gain insight into the family's perspective on family-based therapy.
Click here to access the study.

National News
11 Times Black Celebs Opened Up About Dealing With Mental Health Issues

The Huffington Post recently profiled 11 African-American celebrities who have discussed their mental health issues. These include New York Giants wide receiver Brandon Marshall, wrestler/actor, Dwayne "the Rock" Johnson and singers Alicia Keyes and Michelle Williams.

Click here to read. the article.

Singer Chester Bennington Takes His Own Life on the Day of Chris Cornell's Birthday as Chris Cornell Music Therapy Program Established

July 20th would have been Soundgarden singer Chris Cornell's 53rd birthday. Cornell's completed suicide in May hit the music world extremely hard. One person particularly impacted was Cornell's friend, Linkin Park singer Chester Pennington. Sadly, Bennington took his own life on July 20th. These tragedies have increased the discussion about addressing suicide, as while all the major causes of death in the United State are declining, suicide rates are increasing. Click here to read more about Chester Bennington from Rolling Stone Magazine.

The Seattle-based nonprofit Childhaven announced the establishment of the Chris Cornell Music Therapy Program. Cornell's widow, Vicky Cornell, committed $100,000 to Childhaven to bolster the organization's efforts to help children and their families overcome the effects of trauma. Click here to read more from Rolling Stone.

The 2017 NAMI-NYS Education Conference will feature sessions on both suicide prevention and art therapy. 

CBS News Examines When a Loved One is in Need: How to Navigate Conversations  About Mental Health
As CBS News reports, the impact of untreated mental illness is devastating. More than 10 million adults struggle with a combination of mental health and addiction issues. And suicide is the 10th leading cause of death in the United States, claiming more than 44,000 American lives per year. However, broaching the topic with a friend or loved one can be intimidating and difficult to navigate. This is why they offer a step-by-step guide to help with sometimes difficult conversations surrounding mental illness.

Click here to read more. 

Summary from NIMH Outreach Partner Meeting

Last week's E-News detailed NAMI-NYS's participation in the NIMH Outreach Partner Meeting. Click here to read a summary detailing presentations by NIMH Director Joshua Gordon, and the latest on suicide prevention, treating bipolar disorder, the NIH All of Us initiative and the importance of participating in clinical trials.

NIMH Reports on Guidelines published for treating PANS/PANDAS

An expert panel has published guidelines for treatment of Pediatric Acute Onset Neuropsychiatric Syndrome (PANS) and a subset of patients diagnosed with PAN Disorder Associated with Streptococcal Infection (PANDAS). The syndrome of sudden onset obsessive compulsive disorder and/or severe eating restrictions, and associated characteristic cognitive, behavioral or neurological symptoms, was first identified in the l990s by Susan Swedo, M.D., now chief of the NIMH intramural Pediatrics and Developmental Neuroscience Branch.

Click here to learn more. 


2017 NAMIWalksNYS September 23rd

NAMI-NYS looks forward to building on the success of our inaugural NAMIWalks NYS. The 2017 NAMIWalks NYS will be taking place on Saturday, September 23rd, at Jennings Landing in Albany. You can click here to start your team and/or donate to the walk.  For more information you can email NAMIWalks@naminys.org  

Save the Dates

Click here to learn more and register for the 2017 NAMI-NYS Education Conference- Engagement, Implementation, Internvention: Three Pronged Approach to Sustainable Mental Health Recovery, taking place November 10-12 at the Desmond Hotel in Albany.

JULY 27 Capital District Psychiatric Center Family Services Presents:
"An Overview of the
N.Y.S. Justice Center
for the Protection of
People with Special Needs"
Thursday, July 27, 2017 from 5:00 pm - 7:30 pm in the CDPC Family Resource Center. For more information or to register contact: Frank Greco, Director of Family Services (518) 549-6816.


AUGUST 1 & 2- Webinar: Suicide Postvention - The Role of the School Community After a Suicide. Join us for a webinar with Rich Lieberman, MA, NCSP, and Dr. Scott Poland, who will discuss:
  • The rationale and primary goals of "postvention"
  • The roles and responsibilities within the school community after a suicide
  • Recommendations and resources for schools and districts 
Tuesday August 1st , 1:00 p.m. - 2:00 p.m. and Wednesday August 2nd , 2:00 p.m. - 3:00 p.m.


AUGUST 3- Shakespeare & Co. Books (NYC).  939 Lexington Avenue (corner of 69th Street). Thursday, August 3, 2017, 6:30pm. Author's Talk moderated by Howard Husock of Manhattan Institute. http://www.shakeandco.com/ Must RSVP events@shakeandco.com

AUGUST 9- NAMI-MFH and NYS Office of Mental Health- Community Integration and Employment Exploration:How to Help People Explore Work and Integrate into the Community. Wednesday August 9th from 9:30 a.m. - 2:00 p.m. at 2390 Riverfront Center, Amsterdam NY 12010. Light refreshments provided. To register please contact: Elizabeth Patience, Phone 315-426-3942 or Email: elizabeth.patience@omh.ny.gov
Click here to download flyer

Signature Programs

SEPTEMBER 5 - NAMI Orange Family-to-Family. Tuesdays, September 5Th, 6:30 pm -9:00 pm at the First Presbyterian Church, 33 Park Place, Goshen, NY 10924. Teachers: Dhanu Sannesy and Marcy Felter.  Contact: Dhanu Sannesy, (845) 956-6264; (866) 906-6264 or namiorangeny@warwick.net.

SEPTEMBER 6-NAMI Rochester Family-to-Family. Wednesdays, September 6th -November 29th, 6:30 pm - 9:00 pm. NAMI Rochester Office, 320 N. Goodman Street, Suite 103, Rochester, NY 14607. Contact Beth Winslow-D'Amico at (585) 423-1593 or beth@namirochester.org.

SEPTEMBER 12-NAMI Rockland Basics (Spanish Speaking)Tuesday's September 12th - October 17th from  6:00 pm - 8:30 pm. Location: St. Dominic's Community Waiver Program, 500 Western Highway, Blauvelt, NY. Contact: (845) 359-8784 / familysupport@namirockland.org to register . Teachers: Marilyn Matos and Barbara Martinez-Silva

SEPTEMBER 12-NAMI-NYC Metro Basics. Tuesdays, September 12 - October 17, 6:00 pm- 8:30 pm at    505 8th Avenue, Suite 1103, New York, NY 10018.   To register contact Deniece Chi at (212) 684-3365 x 203 / parent@naminyc.org.

SEPTEMBER 13- NAMI-NYC Metro Basics (SPANISH SPEAKING). Wednesdays, September 13th-October 18th, 6:00 pm- 8:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi (212) 684-3365 x 203 / parent@naminyc.org. 

SEPTEMBER 14-NAMI-NYC Metro Basics. Thursdays, September 14th- October 19th 10:00 am-12:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi at (212) 684-3365 x 203 / parent@naminyc.org.

SEPTEMBER 14-NAMI Rockland Basics. Thursdays September 14 - October 26, 2017 (No class Thursday, September 21st) from  6:30 pm to 9:00 pm. Location: St. Dominic's Community Waiver Program, 500 Western Highway, Blauvelt, NY 10913. Contact:  (845) 359-8784 or familysupport@namirockland.org to register. Teachers: Rita Strumph and Kate Johnson.

SEPTEMBER 17 - NAMI Orange Basics. Sundays, September 17th, 6:30 pm-9:00 pm at the First Presbyterian Church, 33 Park Place, Goshen, NY 10924. Teachers: Dhanu Sannesy and Marcy Felter. Contact: Dhanu Sannesy, (845) 956-6264; (866) 906-6264 or namiorangeny@warwick.net

SEPTEMBER 20-NAMI Mid-Hudson Family-to-Family. Wednesdays, September 20th- December 13th, 6:30 pm - 9:00 pm at The MidHudson Regional Hospital, 241 North Road, Poughkeepsie NY. Contact: Tina Lee programs@namimidhudson.org or (845) 206-9892.

SEPTEMBER 27- NAMI Mid-Hudson Peer-to-Peer. Wednesdays, September 27th- December 6th, 4:00 pm-6:00 pm at the SUNY Dutchess Community College, Poughkeepsie NY. Contact: Tina Lee,  programs@namimidhudson.org  or (845) 206-9892.

OCTOBER 21-NAMI Mid-Hudson Basics. Saturdays, October 21, 28, November 4th, 9:30 am - 3:30 pm at the Arlington High School,  1157 State Route 55, Lagrangeville NY. Contact: Tina Lee,  programs@namimidhudson.org  or (845) 206-9892.

NOVEMBER 1-NAMI-NYC Metro Basics. Wednesdays, November 1st-December 6, 6:00 pm- 8:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi (212)684-3365 x 203 / parent@naminyc.org.

NOVEMBER 2-NAMI NYC Metro Basics. Thursdays, November 2nd - December 7th, 10:00 am-12:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi at (212) 684-3365 x 203 / parent@naminyc.org. 

NOVEMBER 3-NAMI-NYC Metro Basics (SPANISH SPEAKING) Fridays, November 3rd - December 8th, 10:00 am-12:30 pm at 505 8th Avenue, Suite 1103, New York, NY 10018.  To register contact Deniece Chi at (212) 684-3365 x 203 / parent@naminyc.org. 

Please contact your local affiliate program leaders for more information and how to enroll.
NAMI Homefront Teacher Training
September 16th-17th 2017
Trainers: Pam Solomon & Jerry Burton
Location: NAMI-NYS Office Albany
NAMI Family-to-Family Teacher Training
October 20th-22nd, 2017
Trainers: Pam Soloman & Geraldine Burton
Location: NAMI-NYS Office Albany

To have your events and Signature Programs listed in the E-Newsletter contact Christine Rickeman at christine@naminys.org.   

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