December 13, 2017

In This Issue
Quote of the Week:

"If New York State is determined to reduce the use of hospitals and deliver care in the community setting, the state must help housing providers deliver the most appropriate form of care. Recovery in community housing is unachievable without the ability to maintain the best staff possible to provide care, case management and create a true home geared towards recovery. This is why NAMI-NYS is proud to participate in the Bring it Home campaign. "
-Irene Turski, NAMI-NYS Government Affairs Chair
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NAMI-NYS wishes all our readers a joyful holiday season and a happy and healthy 2018. Though we are celebrating the holidays, this is a busy time, especially for advocacy issues. In New York, we are gearing up for what is forecasting to be a difficult budget season. This issue has information on the latest on the Bring It Home housing campaign and opportunities for you to make your voice heard on issues relating to housing and access to medication. We also have an update on the fast moving developments on the federal level.

You will also find information about the NAMI-NYS Board of Directors, affiliate activities and how the major networks are focusing on mental health issues.

Finally we want to thank all of you who have contributed to our Giving Tuesday campaign, we deeply appreciate your support. The campaign will be going through December 31st and we hope you will consider supporting NAMI-NYS. Click here to learn more and make a donation.

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 With You!
Bring it Home Campaign Intensifies as 
New York State Assembly Holds Hearing on Housing

Top: NAMI-NYS Government Affairs Chair Irene Turski testifies before  an Assembly hearing on housing. Middle: NAMI-NYS board and staff show support for Bring it Home campaign. Bottom: Members of the NAMI Queens/Nassau board meet with Toni Lasicki of the Association of Community Living and housing providers in 
Long Island.

A few weeks ago we sent you an Action Alert detailing NAMI-NYS's participation in the Bring it Home Campaign. Bring it Home is a coalition of community-based supportive housing providers, mental health advocates, faith leaders, and consumers and their families, urging New York State to adequately fund community-based housing programs for individuals with psychiatric disabilities. Click here to view the alert and learn how to show your support for the campaign and the issue of housing which has long been NAMI-NYS's main advocacy priority. 

On Monday, December 11th, Assemblywoman Aileen Gunther, the Chair of the Committee on Mental Health, held a hearing on housing. Irene Turski, NAMI-NYS's Government Affairs Chair, provided testimony and detailed the importance of housing for her sister. You can click here to read the testimony. 

You can also click here to read the letter we have sent to Governor Cuomo on this issue.

Click here to watch the latest episode of Mental Health Now which features Tiffany Monti explaining the critical role housing played to her recovery and Association for Independent Living Executive Director Toni Lasicki detailing various housing programs and how the shortage of funding is impacting these programs. 

Click here to read the press release for this episode released by NAMI-NYS and click here to read the Coalition's press release. Please feel free to circulate the press releases. We need your help to spread the message of the campaign and our ask across the state.  

Make Your Voice Heard on Housing and All of NAMI-NYS
Advocacy Priorities-Register Today for our 
2018 Advocacy Day

Click here to visit the webpage for our 2018 Advocacy Day and register. NAMI-NYS foresees many budget challenges this coming year and we need as many voices as possible to come together and advocate for a more mentally healthy New York State.  


NAMI-NYS needs your help projecting our advocacy voice on this important issue. Have you or your family members had positive experiences with housing programs? Have you had negative experiences because of staff turnover? Have you had trouble accessing housing services? We need to hear the good, bad and the ugly on this issue. Please share your story with us, we will not use your name if you don't want us to. Please email your story to
NAMI-NYS Announces New Board Members and Officers

NAMI-NYS is thrilled to announce our board officers for 2017-18:
  • Evelyne Tropper, PhD-President
  • Judith Watt, MSRN-1st Vice President
  • Dhanu Sannesy-2nd Vice President
  • Ariel Coffman, LMSW-Secretary
  • Sue Gagne-Treasurer

NAMI-NYS also welcomes our newest board members:
  • Colleen Casey Johnson-Consumer Seat
  • Ann Canastra
  • Erin T. Clancy
  • Mary Jo Muscolino
NAMI Queens/Nassau's Janet Susin Participates in the
Post-PROJECT ACCESS -Press Conference
Past NAMI-NYS President Janet Susin participated in a press conference announcing the Post PROJECT ACCESS report. PROJECT ACCESS is asking Governor Cuomo to launch a full scale investigation of Network Adequacy*. When commercial health insurers pay substandard rates of reimbursement, providers flee their networks in droves and middle class people in need of care cannot access timely and affordable care unless they can lay out cash. Federal parity law is about upholding the civil rights of people with mental illness and addiction. *Network Adequacy requires that health insurers maintain adequate networks (or numbers) of providers as a condition of their license. This must be monitored and enforced.

At the press conference Janet recalled when her son was first diagnosed with schizophrenia and taken to the hospital, "The first question we heard wasn't, 'how's he doing?' It was, 'do you have insurance?'"  

Click here to read news coverage from the press conference.

NAMI Mid-Hudson honored at Poughkeepsie Women's League Diamond and Denim Event

NAMI Mid-Hudson was honored by the Junior League of Poughkeepsie at the League's 7th annual Denim & Diamonds Benefit Gala at the Poughkeepsie Grand Hotel. The event celebrated both the Junior League's efforts in the community as well as to honor the accomplishments of women and a local organization, all of whom share the Junior Leagues' mission of building a better community. 

As a recipient of the Women of the Year Award, the honoree is also given the opportunity to highlight an organization of her choice. Margaret Hirst Nelson, LCSW-R (Dutchess County Department of Behavioral and Community Health (Retired) selected NAMI Mid-Hudson to received a grant of $250 on her behalf from the Junior League.

The Omicon Nu Omega Chapter of Alpha Kappa Alpha Sorority Sponsors a Performance of Every Brilliant Thing to Support  NAMI Finger Lakes
L to R NAMI Finger Lakes VP Joan Spielholz, AKA ONO member and event sponsor, Millie Clark and NAMI Finger Lakes President Brigitt Schaffner

 The Omicon Nu Omega Chapter of Alpha Kappa Alpha Sorority sponsored a special performance of Every Brilliant Thing at the Kitchen theatre in Ithaca on December 10th. In Every Brilliant Thing, a young boy attempts to ease his mother's depression by creating a list of everything worth living for. Through adulthood, as the list grows, he learns the deep significance it has on his own life. Every Brilliant Thing is a very funny and moving play about the lengths we go to for those we love.
All proceeds from the tickets sales went to the AKA ONO Scholarship Fund and NAMI Finger Lakes (NAMI FL).  "NAMI FL is very grateful to AKA ONO member Millie Clark for sponsoring and organizing this performance. Millie is a long time local educator and community volunteer.  Several NAMI FL members attended the performance and enjoyed the opportunity to meet many of the AKA members.  We look forward to collaborating together on more events in the future," said NAMI FL President Brigitt Schaffner.     
NAMI Provides an Update on Federal Advocacy Issues

Despite the holiday recess fast approaching, Congress isn't showing any signs of slowing down. And, NAMI advocates aren't slowing down either.
The latest advocacy memo had updates on:
  • Federal budget negotiations
  • The Children's Health Insurance Program (CHIP)
  • The federal Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC)
  • Federal tax reform (with action items)
Continuing resolution extends federal budget
On Dec. 7th, Congress passed another "continuing resolution," or CR, to fund the federal government through Dec. 22nd. At that point, we expect Congress will pass another short-term CR to take the federal government into early 2018, when they are expected to revisit budget discussions.
CHIP reauthorization on the horizon?
On Dec. 12th, a bipartisan group of 12 governors  called on congressional leaders to act quickly to reauthorize the federal Children's Health Insurance Program (CHIP), whose funding authorization expired on Sept. 30th. CHIP provides health coverage for more than 9 million low-income children, including children with mental health conditions. With support on both sides of the aisle, Congress is negotiating how to pay for the program.
New development: Congress did include a provision in the Dec. 7th continuing resolution to offer some limited, short-term assistance to CHIP programs. While this may help some states to fund their CHIP programs a bit longer, it does not direct any new money for 2018. Read more about the short-term emergency funding and which states face the most immediate funding threats  here.   
Federal ISMICC to release report
On Dec. 14th, the federal Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC), mandated in last year's 21st Century Cures Act, will release its report to Congress with recommendations on how federal agencies can better serve people with serious mental illness. NAMI CEO Mary Giliberti serves on this committee as 1 of only 14 non-federal members. Immediately following the release, the ISMICC will hold its second meeting at 10:30 AM.  Tune in to watch the meeting.
Tax reform efforts continue
The House and Senate passed different tax reform bills, so the bills are now going to a conference committee, where both chambers will work to reconcile the major differences in the two bills.In both bills, there are proposals that would hurt people with mental illness-and NAMI organizations. As congressional leaders debate a final bill, NAMI advocates need to tell Congress to protect people with mental illness and oppose any tax reform bill that:
  • Results in higher health insurance costs. If the final bill removes fines for people who do not have health insurance (also known as the individual mandate), this will increase the number of uninsured Americans by an estimated 13 million. When fewer healthy people are insured, premiums increase-making insurance less affordable for people with mental health conditions.
    (Senate bill)
  • Ends the tax deduction for medical expenses. Repealing the medical expense deduction - which can include the cost of such things as visits to mental health care providers, inpatient stays or mental health medications - will harm people with serious mental illness who have very high medical expenses.
    (House bill)
  • Decreases the supply of affordable housing. A repeal of the tax exemption on private activity bonds - coupled with reductions in the corporate tax rate - would result in an estimated 950,000 fewer units of affordable rental housing, according to the National Housing Trust. This will cause even greater challenges for people with serious mental illness who rely on Section 811 housing.
    (House bill)
  • Reduces the incentive for charitable giving. Increases in the standard deduction on income taxes are projected to reduce the number of people itemizing deductions, including charitable contributions. The nonpartisan Joint Committee on Taxation estimates that this this will dramatically lower Americans' charitable giving to nonprofits, including NAMI organizations. 
    (Both bills)
  • Politicizes non-profit organizations. A repeal of the Johnson Amendment would allow non-profits (like a NAMI affiliate) to endorse or oppose candidates. NAMI organizations could be pressured, including by donors, to take a partisan stance, jeopardizing bipartisan support among members and elected officials. (House bill)

Don't Have Insurance Coverage For Mental Health? Open Enrollment Ends This Friday

NAMI provides all the details about how you can still sign up for affordable healthcare through the government. The deadline to signup is this Friday, December 15th.

Click here to learn more.

New York News
NAMI-NYS Asks for Help in Participating in a Survey
on Non Medical Switching

NAMI-NYS firmly believes in person centered care when it comes to mental health treatment. A big part of the person-centered approach is access to medication that a provider believes to be most appropriate in addressing a person's unique set of symptoms. While medication may not be needed for every person's recovery, when it is deemed necessary, the person should have access to the medication their providers thinks would be right for them. Health insurance plans are increasingly interfering with patient care by making prescription drug coverage changes mid-contract that force patients to switch to drugs other than what was prescribed by their health care provider. Many individuals select insurance plans based on what medications are covered, and to have the insurance company alter coverage during the contract period could prove disastrous to the patient's health.  NAMI-NYS is very concerned about this practice as anti-psychotic and anti-depressant medications are not interchangeable and drug-to-drug interactions with medication being taken for co-occurring disorders must be considered.

NAMI-NYS is helping gather information from patients, caregivers and providers who have experienced non-medical switching. This information will help us positively influence state legislation to end this unfair insurance practice in New York State and help ensure insurance companies are honoring their contracts with patients. This is a short 14 questions survey and should take no more than five minutes to complete.

Click here to take the survey for patients and caregivers.
Click here to take the survey for providers.

Stigma of Mental Illness Still an Obstacle to Treatment
in Western New York
Last week, the Buffalo News published an article detailing the findings from a study conducted by the Erie County Anti-Stigma Coalition from the polling of 400 county residents. Among the troubling findings were:

  • Slightly more than half said they wouldn't reach out for mental health resources or services because "People will think I'm not normal."
  • One in four believed people who have a mental illness can get better.
  • About half of those questioned said they would be comfortable talking with a family member about a mental health concern,
  • Four in ten said they'd dare to talk with a friend about a mental health issue.
  • More than three in four were unaware about websites and other resources available to help with such concerns.

Click here to read the full article. 


National News
NBC News Reports on Generation at Risk:
America's Youngest Facing Mental Health Crisis
NBC Nightly News is focusing on the growing numbers of youth suffering from mental, emotional or behavioral disorders. According to the Centers for Disease Control (CDC) one in five American children ages 3 through 17 - about 15 million - fall into these categories every year.

The statistics for early diagnosis and treatment of these children are frightening. Only 20 percent of these children receive treatment. Research also indicates that serious depression is worsening in teens, especially girls, and the suicide rate among girls reached a 40-year high in 2015, according to a CDC report released in August.

Over the next few months, NBC Nightly News will examine the state of American children's mental health, including reports on what has led to this increase - especially in anxiety and depression - treatment obstacles, promising research and innovative programs to help children.

Click here to read more. 

CBS Profiles Logic and His Commitment to Raise 
Mental Health Awareness  

Last week, CBS Sunday Morning profiled the rapper Logic, whose hit Grammy nominated song 1-800-273-8255 (named for the National Suicide Prevention Lifeline ) has brought a great deal of attention to suicide prevention and mental health awareness.

Logic discusses how he was raised by his white mother who suffered from mental illness and addiction and how his African-American father was incarcerated. "My mother was addicted to drugs, pills. She was bipolar. She was an alcoholic," he said. "My father was addicted to crack cocaine."

He also details how after he achieved success he developed a crippling form of anxiety called derealization disorder that left him hospitalized. "It's an intense form of anxiety where you feel like you're almost separated, and there's a filter between you and reality at all times because you're hyper-analyzing the situations around you," he said. "For a year, I was in the worst place in my life. I had made more money than I could've ever dreamed of. I bought this home that we're in right now. I was happily married. And yet, I was unhappy."

Click here to watch the profile.


Vince Del Balzo and Karen Bartholomew of the NIMH Schizophrenia Unit along with Dr. Kathleen Merikangas and Matthew Shapiro at the 
2017 NAMI-NYS Education Conference

NIMH Update

Click here to read the latest Update from NIMH.

Dr. Joshua Gordon recognized by the 
American College of Neuropsychopharmacology (ACNP)

Joshua A. Gordon, M.D., Ph.D., Director of the National Institute of Mental Health (NIMH), has been promoted to Fellow status by the American College of Neuropsychopharmacology (ACNP). The announcement was made by Joseph Coyle, M.D., ACNP Secretary. In addressing Dr. Gordon, Coyle said, "Your advanced status provides new opportunities for you to contribute to the College and to share your expertise in additional ways with the ACNP."

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 ,
 or call 1-877-646-3644 (1-877-MIND-NIH [TTY: 1-866-411-1010].

Save the Dates

Click here to register.

DECEMBER 2-17-NAMI Schenectady Tree of Hope at the Schenectady Festival of Trees that runs Dec 2-17th at the Schenectady County Historical Society and the YWCA of Schenectady County on Washington Avenue in the Stockade Historic District of Schenectady.  This fund-raising event costs $6 for adults, $2 children 12 and older and free for children under 12.  Hours are 10-4 including Saturday and Sunday.  

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.
Signature Programs
MARCH 6 -NAMI Queens Nassau Family-to-Family. Tuesdays March 6- May 23 2018, 4:00 p.m.-6:30 p.m. at the 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 . Co-Leaders: Sonya Evariste (718) 482-5217 and Muriel Jon Baptiste (917) 715-9725.

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