January 6, 2017

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Governor Cuomo Signs 
Step Therapy Legislation!!!

Happy New Year readers! This first edition of 2017 NAMI-NYS E-News comes with mixed emotions. First, we celebrate the Governor's signature on the Step Therapy Bill we have spent years advocating for. Thank you to all of you who contributed your voice to this tough fight and helped New York pass the nation's strongest step therapy regulation bill. You can read more about this in the New York News section.

The signing of the bill is historic for NAMI-NYS as it was the third of our top three 2016 legislative priorities (along with Paid Family Leave and the Mental Health in Schools Bill) to be signed into law. These victories are a testament to the powerful voice of our grassroots advocates. While we celebrate these victories, we must know that our voice will be needed more than ever as we have many challenges ahead. This edition details how the threats to the Affordable Care Act and Medicaid can have disastrous results for people with mental illness and their families. Along with information about these concerns, you will also find information on NAMI's federal advocacy priorities. NAMI-NYS will be sharing our priorities next week. 

Our joy is also tempered as we continue to mourn the losses of leading mental health advocates here in New York with the passing of Ruth Levell and on the national level with the passing of Carrie Fisher. This edition finds tributes to both. 

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!

Remembering Ruth Levell

As we previously reported, NAMI-NYS pioneer and founder of NAMI Harlem Ruth Levell passed away in December. Ruth was not only one of the warmest and kindest people you would ever want to meet, but she was also a determined and passionate advocate for improving the delivery of mental health services and combating the stigma associated with mental illness, especially for those in multicultural and underserved populations. On behalf of the countless people who benefited from Ruth's work, we wish to extend our most heartfelt feelings of gratitude to an incredible life lived. We continue to keep Ruth's family in our thoughts as together we mourn her loss.

Upon learning of her passing New York State Senator Bill Perkins said, "Condolences on behalf of Senator Bill Perkins and the citizens of my senatorial district to a tireless champion for our community- with a vision of a world without discrimination against individuals and or families suffering mental illness in Harlem...A true trailblazer/hero!!!

Services for Ruth Levell will be held on Thursday January 12th at Banta's Funeral Home 630 St. Nicholas Avenue (141st Street), New York, N.Y. 10030. Viewing will be held from 9:30-10:30 and the funeral will follow.

NAMI-NYS Member Anil Sannesy Featured in Poughkeepsie Journal

NAMI Orange County's Anil Sannesy (who is also the son of NAMI-NYS board member Dhanu Sannesy) was recently featured in an article in the Poughkeepsie Journal detailing a new initiative to decrease stigma of mental illness throughout the Hudson Valley and Southern Tier. 

Click here to read more. 

NAMI Huntington Spreads Holiday Cheer at Kirby Psychiatric Facility

NAMI Huntington was proud to gather and deliver 400 books and magazines for the inpatients at Kirby Forensic Psychiatric Center. Both staff and inpatients were so grateful for the gifts which  were the result of private donations and Friends Academy on Long Island.

NAMI Huntington also distributed 350 pairs of socks, 350 candy canes and 350 signed holiday cards for the inpatients at Kirby. These were made possible through the donation of the affiliate's members. Along with the gifts, NAMI Huntington has also provided NAMI brochures for patients, staff and Families.


As the New Congressional Session Begins NAMI Releases Their Advocacy Priorities

As the 115th Congress convened this week NAMI released their federal advocacy priorities. In a press release NAMI CEO Mary Giliberti said,   "Last year, Congress overwhelmingly passed the most significant mental health legislation in years. But we're not done. We look forward to working with Congress to ensure that the progress we made serves as a foundation for improving mental health care in America." 

The 2017 Priorities are:
  • Invest in Mental Health and Innovation
  • Promote Early Intervention
  • Improve Integration of Care
  • Support Caregivers, Military Service Members and Veterans
  • End The Criminalization of Mental Illness
Click here to learn more.

Dr. Lloyd Sederer Writes Blog for NAMI Website

Lloyd Sederer, MD, Medical Editor, Psychiatry for the Huffington Post, Adjunct Professor at Columbia University and Chief Medical Officer for the New York State Office of Mental Health recently wrote a blog for NAMI. The blog details strategies for living well and his new book Improving Mental Health: Four Secrets in Plain Sight

Click here to read the blog.
You can also click here to watch the episode of the NAMI-NYS produced television show Mental Health Now featuring Dr. Sederer. 
New York State News
Step Therapy Signed Into Law

For many years, regulating the use of Step Therapy, a practice where insurance companies refuse to cover medication prescribed by a doctor forcing a patient to "fail first" on a less expensive medication before being allowed to "step up" to the originally prescribed medication, has been a major advocacy priority for NAMI-NYS. This year, our advocacy coalition finally got a bill that would make it easier for a doctor to override an insurance provider decision through the Legislature as both houses passed the bill unanimously. 

NAMI-NYS has appeared on the news program Capital Tonight, participated in meetings with Governor Cuomo's office and a rally in front of the Capitol to raise awareness of the importance of this issue.

As the year came to a close, Governor Cuomo signed the bill into law. We are extremely grateful to all of you who spoke up on this issue, to the bill's sponsors Assemblyman Matthew Titone and Senator Catharine Young and Governor Cuomo for signing the bill. 

Click here to read the bill approval memo with Governor Cuomo's signature. 

Click here to read an article about the signing from the Albany Times Union. 

Governor Cuomo and The New York Times Express Concerns about "the Mental Health Crisis in Trump's America"

President-Elect Donald Trump and the Republican controlled Congress have made repealing and replacing the Affordable Care Act (ACA) also known as "Obamacare" as their top priority. This past Wednesday, Governor Andrew Cuomo announced that repealing the law could mean a $3.7 billion impact on the state budget and leave more than 2,000,000 people without health care coverage in New York.

The New York Times detailed how repealing the ACA would have a disproportionate impact on people living with mental illness, especially those with serious mental illness, when coupled with reduced funding to Medicaid, a possibility discussed by the incoming administration. As we reported in the December 9th E-News, New York State was granted a five-year Medicaid extension.

Click here to read more about Governor Cuomo's remarks.
Click here to read the piece from the New York Times.
NAMI also released an advocacy sheet on  the importance of Medicaid for mental health care, which you can click here to read. 

Nonprofit Helping Mentally Ill Plans 7-Story Building in Queens

Transitional Services for New York, (TSINY), a nonprofit providing mental health services, will break ground on a new 7-story apartment building in downtown Jamaica next week near the Jamaica Colosseum Mall.
Avé McCracken of TSINY said the building will feature 44 studio apartments, providing housing to the organization's patients (33 units) as well as low income residents from Queens (11 units).
Click here to read more
National News
Remembering Carrie Fisher As A Hero for 
Mental Health Advocacy

Actress Carrie Fisher who passed away on December 27th is best remembered for her role as Princess Leia in the Stars Wars films. However, for those in the mental health community Fisher was a hero not for being a rebel princess in a galaxy far far away, but for being one of the first public figures to openly discuss her mental illness (bi polar disorder), use of electroshock therapy (ECT) and addiction issues. She was a powerful voice of awareness at a time when many suffered in silence. Her courage to speak up undoubtedly helped many. 

NAMI-NYS is grateful for all that she did to advance our movement and sends our condolences to her family.

Click here to view a story about Carrie Fisher's mental health advocacy from the Today Show and click here for one from the Huffington Post.   

SAMHSA Chief Warns 'Huge Loss' If Protections Go Away Under ACA Repeal 

Politico this week interviewed Kana Enomoto, who leads the Substance Abuse and Mental Health Services Administration (SAMHSA), who detailed the likelihood of negative consequences if Congress repeals the Affordable Care Act without preserving coverage and parity protections for people with mental illness. "It's my responsibility to present what the science tells us and how the services being offered are benefiting the nation's health and what happens if they go away."  

Click here to read more

Kitty Dukakis, a Beneficiary of Electroshock Therapy, Emerges as Its Evangelist

The New York Times recently wrote an in depth piece on former Massachusetts first lady Kitty Dukakis.  When  her husband Michael Dukakis lost the presidential election in 1988, Kitty felt as if she had been squashed in a compactor, all the air forced out of her. Her even-keeled husband went back to work as governor of Massachusetts; she started binge drinking.
"An alcoholic can contain himself for only so long," Mrs. Dukakis would later write. "When a crisis hits, the restraints snap."
Her drinking masked a long-smoldering depression that eventually led her to receive electroconvulsive therapy, also known as electroshock therapy or ECT. Now, 15 years later, the Dukakises have emerged as the nation's most prominent evangelists for the treatment which is still quite misunderstood among most people.

Click here to read more. 

Inconvenient Truths of Mental Illness:
More People Take Medication, 
But Progress has Stalled

Scientific American and Salon recently reported on how the 1990s and 2000s saw a great deal of progress in treating psychiatric disorders due to a flood of life-changing medications and other options becoming available to tackle long-standing, treatment-resistant disorders. Despite the advances during the previous two decades, today the picture is not as bright. 

This lack of progress is what Thomas Insel, former director of the National Institute of Mental Health, calls one of the "inconvenient truths" of mental illness. Suicide rates per 100,000 people have increased to a 30-year high. Substance abuse, particularly of opiates, has become epidemic. Disability awards for mental disorders have dramatically increased since 1980, and the U.S. Department of Veterans Affairs is struggling to keep up with a surge in post-traumatic stress disorder (PTSD).
The article poses the question: if more people are receiving treatment, why has the mental health of the nation declined? The article states that while "we appear to be better at treating the depressive phase of bipolar disorder, and Clozaril is a more effective treatment for schizophrenia than its predecessors, much of what seemed so revolutionary 20 years ago was more illusion than substance."
Click here to read more. 

Director's Message:
Neural Circuits Research: How and Why

In his latest Director's Message, Dr. Joshua Gordon discusses an approach to translating neural circuit technology into novel treatment methods. These studies are an example of a research program with the potential to yield benefits in the medium-term.

Click here to read Dr. Gordon's message.

Adding Mental Health to Primary Care:
A New Era of Behavioral Health Integration

Many people visit a primary health care provider to treat physical diseases and injuries. However, it is also common for patients to see a primary care provider because of behavioral health issues including mental illnesses such as depression, anxiety, or problems with alcohol use. The primary care provider can treat mental disorders, particularly through medication, but that may not be enough. Integrating a "Collaborative Care" approach is one proven way primary care providers can enhance the quality and effectiveness of their behavioral health treatment.

Click here to read more. 

NIMH Training Grant Recipient Wins Research Prize

NIMH training grant recipient Neir Eshel was named the 2016 Grand Prize winner of the Science & SciLifeLab Prize for Young Scientists. Science, a peer-reviewed journal published by the American Association for the Advancement of Science (AAAS), and Science for Life Laboratory (SciLifeLab), a Swedish national center for molecular biosciences, created the prize to encourage young scientists as they begin their careers.

Click here to read more. 

 Research Study Recruitment: Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and 
Healthy Volunteers

NIH Behavior and Brain Imaging Research Study currently enrolling children and young adults (5-25 years old) with X & Y chromosome variations. Participation includes an initial 2-day outpatient visit and a visit every 2 years to the NIH Clinical Center in Bethesda, Maryland. Compensation, transportation within US, lodging, and meal allowance provided. For more information, contact Jonathan Blumenthal, MA at jb364e@nih.gov or (301) 435-4516.

Save the Dates


January 10th - Brain & Behavior Research Foundation (BBRF) presents their latest monthly webinar, featuring a presentation from Fritz A. Henn, M.D., Ph.D., Foundation Scientific Council Member,  2014 Recipient of the Colvin Prize for Outstanding Achievement in Mood Disorders Research, Professor, Cold Spring Harbor Laboratory, Professor of Psychiatry, Mount Sinai School of Medicine focused on bipolar disorder. 

Dr. Henn applies imaging, animal studies, and genetics to understanding the bases of depression and schizophrenia.

Click here to register and Click here for more info.

January 11 NAMI-NYC Metro presents "Thought Leaders at the Intersection of the Mental Health, Public Health and Criminal Justice Systems." 6-8pm at Kramer Levin 1177 6th Ave. We open with a presentation by Chief Medical Officer for NYS OMH, Dr. Lloyd Sederer, on his new book, Improving Mental Healthcare: Four Secrets in Plain Sight. The book provides a springboard for a discussion, moderated by Dr. Lisa Dixon, on the intersection of the criminal justice system and mental health care. Our panel includes New York thought leaders in psychiatry, public healthcare, and criminal justice: Francis Greenburger of the Greenburger Center for Social and Criminal Justice, Cindy Rodriguez of WNYC, and Detective Jeff Thompson of the NYPD. Seats are free and limited. Click here to RSVP. 

January 25th NAMI Westchester will be holding their 2017 Advocacy Event featuring NAMI-NYS Associate Director for Public Affairs Matthew Shapiro and other speakers. The event will be taking place from 7-9pm at St. Vincent's Hospital 
275 North Street, Harrison, NY 10528

Click here for more information.

February 14-NAMI-NYS Advocacy Day. Meeting Room 4 Empire State Concourse. More info coming next week.

February 16Capital District Psychiatric Center Family Services presents "Overview of Mobile Crisis Services" featuring Katie Flanagan, LCSW. The discussion will take place at the CDPC Family Resource Center located at  75 New Scotland Ave, Albany, NY 12208
beginning at 5pm and will be followed by a family support group.

Click here to register and for more information.

February 16- NAMI Westchester will hold a screening of "People Say I'm Crazy" at the Picture House, 175 Wolfs Lane, Pelham, NY 10803

Doors open 6 p.m. -- Screening begins at 6:15 p.m.
Panel Discussion to follow screening with leading professionals
in the field of schizophrenia and individuals living in recovery.
Tickets $15 per person
Tickets must be purchase in advance by February 12, 2017

Click here for more information.

March 7- Information meeting for 2017 NAMIWallks NYS. More information coming soon.

April 21-2017 "A Brighter Day" event at Glenpeter Jewelers. More information coming soon. 
Signature Programs
January 21st-NAMI Mid-Hudson offers a three-week NAMI Basics course through February 4th. The course will be held from 9am-3pm at the North East Community Center located at 51 South Center Street Millerton  NY 12546.

To register, please contact: Jo Ann Brown, Program Director (845) 832-6368 or email: programs@namimidhudson.org  

Click here for more information. 

JANUARY 30- NAMI Rensselaer Family to Family. Mondays Starting January 30 until April 24, 6:00 pm- 8:30 pm. NAMI-NYS Office 99 Pine St. Suite 105, Albany, NY 12207. Contact information: Mary Beth Nelligan at mbnelligan@gmail.com  or Christine Rickeman at (518) 462-2000 / christine@naminys.org

JANUARY 24- NAMI Rensselaer will be starting a Family Support Group the 2nd and 4th Tuesdays of each month 6:00 pm-7:30 pm at the Church of Latter Day Saints, 420 New Scotland Ave, Albany NY 12208. Contact information:Jeff Kellert (518)-527-5669/jmk82652@aol.com or Christine Rickeman (518)462-2000 / christine@naminys.org

JANUARY 23 NAMI Long Island  Family to Family.  Mondays starting Jan 23 until April 24 (no class Jan 20 and Feb 6).  Syosset Hospital 221 Jericho Turnpike, Syosset, NY 11791. Contact information: Vincent Esselborn  (516) 742-7839 Home, (516) 941-8946 Cell.

JANUARY 11-  NAMI Rockland,Family Support Group.
Wednesday, 11:30 am - 1:00 pm at  RPC, 140 Old Orangeburg Rd., Bldg#57, 1st Fl Classroom, Orangeburg, NY  10962

JANUARY 11 - NAMI Rochester Family-to-Family. Wednesdays, January 11th - March 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.

March 8-NAMI Rochester in collaboration with the Department of Veterans Affairs will be offering a NAMI Homefront course through April 12th. The course will be offered on Wednesday's from 6-8:30pm at Vet Center located at Crossbridge Office Park, 2000 S. Winton Rd, Bldg 5, Suite 201 Rochester, NY 14618.

Click here to register. 

APRIL 6 - NAMI Rochester Family-to-Family.  Thursdays, April 6th - June 22nd, 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 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.
Please contact your local affiliate program leaders for more information and how to enroll.

NAMI Ending the Silence
March 4th, 2017
Trainer: Jodie Terhune
Location: NAMI Rochester Office
NAMI Family-to-Family Teacher Training
March 10th-12th, 2017
Trainers: Ann Canastra & Cheri Caiella
Location: Comfort Suite Cicero-Syracuse
NAMI Basics Teacher Training
April 1st-2nd, 2017
Trainers Almarie Tulloch & Karen Alvarez
Location: NAMI Rockland Office
NAMI Peer-to-Peer Mentor Training
April 21st-23rd, 2017
Trainers: Cynthia Scott & Donna Israel
Location: NAMI-NYS Office Albany
NAMI Family-to-Family Teacher Training
May 19th-21st, 2017
Trainers: Patti Sacher & Bonnie Goldberg
Location: NAMI-NYS Office Albany
NAMI Homefront Teacher Training
May 20th-21st, 2017
Trainers: Pam Solomon & Jerry Burton
Location: NAMI-NYS Office Albany
NAMI Support Group Facilitator Training
March 25th-26th, 2017
Trainers: Pat Sine & Jack Goldstein
Location: NAMI Rochester Office
NAMI Support Group Facilitator Training
June 3rd-4th, 2017
Trainers: Deniece Chi & Nancy Parker
Location: NAMI-NYS Office Albany
NAMI In Our Own Voice Presenter Training
June 3rd-4th, 2017
Trainers: Bill Perun & Chris Wasilenko
Location: NAMI Rochester Office
NAMI In Our Own Voice Presenter Training
June 24th-25th, 2017
Trainers: Cynthia Scott & Lady Charmaine Day
Location: NAMI-NYS Office Albany
NAMI Family-to-Family Teacher Training
October 20th-22nd, 2017
Trainers: Patti Sacher & Bonnie Goldberg
Location: NAMI-NYS Office Albany
NAMI Homefront Teacher Training
October 21st-22nd, 2017
Trainers: Pam Solomon & Jerry 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