My Mental Health Journey: Stand Up Against Stigma!

By Jacquese Armstrong
I Educate the Next Generation by Disclosing My “Mental Illness”

I’ve lived most of my life literally walking through the valley of the shadow of death. And yet, hope and resilience follow me as if I know the way out. But the one thing I have no hope of changing or getting over is being considered a throw-away person in this society.

These are the words I choose to start the introductory essay in a memoir of essays I call Informed Naivete. One could think that my assertion is a bit skewed or harsh, but these are my thoughts associated with the aftermath of the dreaded “s” word.

Often, I’ve thought that if everyone who has, or cared about someone with, a mental illness stood up against stigma, we would outnumber the rest. Where would the stigma be then? And stigma is real. It can not only make your social life uncomfortable, but it can greatly affect your ability to earn a decent living.

So, why do I choose to disclose my mental health challenges? Why would I publish articles under my birth name, publish a poetry chapbook on my mental health challenges and welcome the chance to speak on mental health challenges and stigma and why am I so adamant about it, knowing what I know?

Although I am a psychiatric survivor of 35 years, I have only disclosed since 2006 when I agreed to be interviewed for a documentary on mental illness and minorities. Now, I have many projects that would be all but impossible to do without disclosing. Of course, it was a journey.

Before 2006, my “mental illness” was my most well-guarded secret. I lost a lot of friends in those first couple of years in the 80s and there were whispers and stares, but then I moved more than once. Because I was still in and out of the hospital, I developed lies and kept them going. 

The lies were used to patch the holes in my resume, explain the eight years it took me to finish college, the many colleges I attended, the disappearances, and the work absences. The world definitely doesn’t make it easy for you to resume the race and the charade becomes a job within itself. It also led to undue stress and anxiety. It fueled my paranoid symptoms, which at the time, were not under control at all. I was always in a state of flux, wondering who knew.

I came to realize that I was stigmatizing myself by living in fear and shame, playing into the stigma game. I asked myself, “How can I call for an end to stigma and discrimination if I am ashamed myself.”

It’s almost like making the decision to go natural with your hair. When I did, it wasn’t popular and it’s still not aesthetically pleasing to some employers. I looked at myself in the mirror one day as I blow-dried my hair and curled it with a curling iron and asked, “What’s wrong with my hair?” This was the day of a huge self-embrace. The 2006 documentary I participated in was another. Looking back, that decision was the beginning of my making sense of this mess.

Self-disclosure provided me with the freedom to come out of the shadows into the sun and be the person my Maker intended me to be; who I am. It was a tremendous boost to my self-esteem.
Years ago, at the age of 34, my grandparents had a discussion with me about my illness. They said, “Jacquese, this is God’s Will for you…you have to accept it.” Then, I thought they were “crazier” than I was, but now I see the wisdom in what they told me.
First of all, you can’t heal from something you don’t accept and you must try to heal. You can fight against it, but in the end, you’re fighting against yourself.

Second, most people want to find purpose and meaning in life. Why am I here? Why am I suffering? For me, if I have to suffer (and I have), then let me help someone else to rejoin society without missing too many steps. Let me enable them to embrace the opportunities I lost because of my challenges.

I started Project Onset, still in its infancy, which is a part of the African-American Outreach program of NAMI-NJ (National Alliance on Mental Illness-New Jersey). Through testimonies from a person with mental illness whose onset happened in college (me), a parent of a college-age student and a mental health professional, young adults and their families receive an education on how mental illness can occur in those crucial years.

In the end, I just want to be able to make some sense of my pain and helping people is the best way I know to do that. So, I educate, motivate and inspire on a grassroots level because I know it’s needed. It is a purpose-filled life, driven by the desire to help eradicate stigma for the next generation of survivors. That is why I make the decision to disclose my psychiatric illness. It helps me to take control of my destiny. I know that only I can control whether I feel ashamed or not. Stigma feeds on shame.

So, imagine if everyone with, or who cared about someone with, a “mental illness” stood. Then, we could all just get back to the business of living. 

Report Finds Barriers to Justice for Individuals in New York City Courts

Report Finds Barriers to Justice for Individuals in New York City Courts

By Nahid Sorooshyari, Senior Staff Attorney, MFY Legal Services, Inc.

We Examine the ADA Liaison Program

People with disabilities should have equal access to justice. Disability rights laws, like the Americans with Disabilities Act (ADA), require courts to make their programs and services accessible to people with disabilities. The New York Unified Court System (UCS) has a program for helping people with disabilities, called the ADA Liaison program. However, a recent report by MFY Legal Services found that the program needs to be improved.

The ADA requires courts to be accessible to people with physical disabilities. Courts must also make reasonable accommodations to their rules, policies, and procedures so that people with all types of disabilities—including psychiatric and invisible disabilities—can participate in the court’s services, programs, and activities to the same extent as people without disabilities. UCS has assigned at least one “ADA Liaison” to each courthouse. ADA Liaisons are court employees who should know about the ADA and how to work with people with disabilities. People with disabilities can contact their local ADA Liaison to request a reasonable accommodation or get information about their rights and are encouraged to do so before they come to court. The program could be a great help, but it has serious flaws.

Many people who need the program do not even know it exists. UCS is supposed to advertise information about the ADA and the ADA Liaison program. It uses an “Accessibility Information Webpage” to do so, but this webpage is not always highlighted on individual court websites or on other parts of the UCS website. UCS is also supposed to advertise the program in courthouses. UCS has posters to do so, but the posters are poorly designed. For example, they include four symbols—a person in a wheelchair, two hands symbolizing sign-language interpreting, an ear with a bar over it indicating services for the deaf, and a person with a cane. These symbols do not make it clear that people with psychiatric disabilities may also get accommodations.

Someone who finds out about the program faces another problem—reaching an ADA Liaison. UCS’s webpage provides a directory of ADA Liaisons. People are told to use the directory to contact their local ADA Liaison at the listed phone number. In May 2016, MFY tried to confirm the contact information of all forty-nine civil court ADA Liaisons listed for the five boroughs. MFY had a problem contacting the listed ADA Liaison more than 65% of the time. For example, 24% of the names and numbers listed were either for retired or former staff, or someone who stated they were not the ADA Liaison and 18% of the phone numbers simply did not work. Either the number was not in service or the call was sent to voicemail, but the caller could not leave a message. When we could leave a message, 24% of the voicemails were not returned within eight business days.

During the phone survey, MFY spoke to court staff who did not know about the program, or said that there was no ADA Liaison at that court. One person stated that she was given the position, but was never trained. In 2012, MFY requested all training materials provided to ADA Liaisons and documents stating which ADA Liaisons receive training and how often. The Office of Court Administration provided only a two-page pamphlet titled “Communicating with People with Disabilities,” and stated that there were no records about which ADA Liaisons received training or how often.

Probably due to poor training, ADA Liaisons often get the law wrong. For example, an MFY client requested to appear in court by telephone because a medical condition made her incontinent. The ADA Liaison incorrectly said that this was impossible because the client “lived in New York City.”  Also, ADA Liaisons too often suggest guardians ad litem (“GALs”)—people appointed to advocate for those who are unable to advocate for themselves. Though some people with disabilities may need a GAL, most can advocate for themselves with a reasonable accommodation. For example, someone with agoraphobia should be allowed to appear by telephone, not be assigned a GAL.

MFY’s report recommends ways to improve the ADA Liaison program. Since the report’s publication, MFY has met with court officials and community groups to try to implement these solutions and make justice for all a reality. If you would like to read MFY’s report, please visit our website at www.mfy.org. 

Let My People Go! A Call to Action

Let My People Go! A Call to Action

By Suzanne Gruer, Former Resident of an Adult Home

The Warehousing of Our Peers Must End

Almost five years ago, I was fortunate to leave the Garden of Eden adult home in which I resided for close to that long. My move from that adult home to the supported housing apartment in which I now reside was a one-time occurrence. Thousands of adult home residents today are less fortunate. They desperately want out. Yet few residents are escaping.

Current adult home residents are desperate to move for the same reasons I was: unsafe and unsanitary living conditions, theft, rancid food, compulsory program attendance, forced and unnecessary medical procedures, punitive hospitalizations, and suffering of all of the above in coerced silence. The owner of Garden of Eden was known for ordering residents to perform tasks for his benefit. Indeed, he once called me to his office to demand that I throw out the remains of his gourmet meal after he dined. Fearing he would hospitalize me if I refused, I complied.

Shortly thereafter, a social worker from the mental health day treatment program I was coerced to attend, in cahoots with a psychiatrist friend, completed an HRA 2010E application for supported housing on my behalf. In less than two months I moved into my airy, sunlit apartment. One month later the social worker lost her job.

Most residents were not as fortunate as I. They had no way out. Adult home owners conspire with day treatment and mental health providers to portray their residents as victims incapable of caring for themselves in a supported apartment milieu. I entered Garden of Eden ready to work so I could move out and rent my own place. Instead of working, I was forced to attend a day treatment program. I sat in that program for close to five years of my life. I now view those years as five wasted years, time I can never get back. Shortly after I moved I obtained employment, proving that I could have worked long before I moved into my apartment.

Frustration has been mounting over the inhumane warehousing of people with mental illness and other disabling conditions for many years. This frustration led to the 1999 Supreme Court decision, Olmstead v. L.C., in which the Court ruled that under Title II of the Americans with Disabilities Act (ADA), individuals with disabilities are entitled to live in communities of their choosing, rather than in institutions, so they can become integrated, fully participating members of their communities.

In 2003, Disability Rights New York (then Disability Advocates Inc. or DAI), the Bazelon Center for Mental Health Law, the Urban Justice Center’s Mental Health Project, MFY Legal Services, New York Lawyers for the Public Interest, and pro bono counsel Paul, Weiss, Rifkind, Wharton & Garrison LLP filed a class-action lawsuit challenging the adult home industry’s illegal warehousing of approximately 4,000 individuals with serious mental illness in New York City. In 2009, they prevailed in a five-week federal court trial. In 2012, the U.S. Court of Appeals for the Second Circuit vacated that ruling on the grounds that the class representative, DAI, did not have standing to represent the class. In other words, the Court stated the class needed to be represented by actual residents living in adult homes.

The case was refiled as O'Toole vs. Cuomo. In 2013, a settlement was reached that required New York State to provide a multi-step, five-year process to transfer potentially over 4,000 adults with mental illness to supported apartments from adult homes.

The first step in this process is “in-reach,” during which housing contractors send representatives into adult homes to ask residents if they want to be assessed. Only about half of the 4,000 class members have expressed a desire to be assessed, largely because of poor “in-reach” and adult home practices that inhibit free discussion, such as lack of privacy to speak with in-reach workers.

Assessment is the second step. Although there are delays at each step, and the State of New York is performing poorly throughout the process, the most significant and alarming delay is at assessment. Because the State has neglected to enforce its contract with Transitional Services for New York, Inc. (TSI), a backlog of over 800 people waiting for assessment has persisted for more than a year. Of the 2,200 adult home residents who have expressed interest in moving to supported housing, approximately 500 residents have actually moved to community apartments over the past three years. A large part of the delay seems to be due to the insufficient staffing of the evaluation team. TSI employs only four people to conduct evaluations of adult home residents who wish to move into apartments in the community.

Both the assessment of a resident and a resident’s Human Resources Administration (HRA) approval (the third step) expire after twelve months. For some residents, there are issues that are never resolved such as assessment discrepancies resulting in either the assessment or the HRA approval timing out. This forces the resident to re-initiate the transition process after they have been expecting to move for at least a year.

The last steps in the transition process are housing contractor referrals and interviews, apartment viewing, apartment selection, moving to an apartment, and coordinating the appropriate services to help each resident to succeed in the community. These steps are conducted poorly as well, with residents often lacking services when they move.

The multistep process is bad. Yet bad has become worse. Over the past two years, more than 1,000 people with serious mental illness have been newly admitted into the impacted adult homes, contrary to the State’s unenforced regulations prohibiting such admissions.

In February 2017, a complex legal situation arose when the State colluded with the adult home industry to challenge the regulations for, and ultimately undo, the settlement.

On March 22^nd, the Coalition of Institutionalized Aged and Disabled (CIAD) spoke out in Albany against all this. This group of residents and allies works to advocate for the 5,000 residents trapped in adult homes. Simultaneously, plaintiffs’ counsel took legal action seeking to uphold the settlement.

Recently, in the comfort of my supported apartment, on my own couch, I watched a newsflash about NYC schoolchildren being fed rancid school lunches and the ensuing outrage. For years as an adult home resident I had no couch on which to sit and had to eat the rancid food served. Last night I cooked myself fresh chicken soup because I felt like it, all the while wondering: Where is the outrage concerning how adult home residents are made to suffer; about how I was made to suffer? Adult home residents, for the most part, are not viewed as the people we are; rather, adult home owners see us as objects that are mere conduits for profit. Most others don’t see us at all.

Note: To find the best way to get involved, please contact Geoff Lieberman of CIAD, at (212) 481-7572, or glieberman@ciadny.org

A Day of Advocacy and Demonstrations

A Day of Advocacy and Demonstrations
By Carla Rabinowitz, Advocacy Coordinator, Community Access, & Board Member, NYAPRS
NYAPRS Legislative Day 2017

February 28, 2017 was probably my favorite NYAPRS Legislative Day ever. New York Association of Psychiatric Rehabilitation Services is a 35-year-old organization that brings together mental health recipients and recipient-friendly service providers.
Mental health advocacy has come a long way. We are finally getting the respect we deserve.
The folks in attendance heard from Senator Robert Ortt, Assemblywoman Aileen Gunther, a representative from Governor Cuomo’s office, and a representative from the Office of Mental Health. We also gave out awards, including an award to Senator Jeffrion Aubry for his work on criminal justice issues.
New York City folks accounted for about 360 of the 700 people in Albany that day.
NYAPRS statewide folks filled a large auditorium called The Egg, which is shaped like an egg.
We not only heard from leaders in New York State government, we heard from NYAPRS’ Executive Director Harvey Rosenthal. Harvey went over the issues he hoped the attendees would talk about that day, including:
Funding to shore-up existing housing; Funding for new supportive housing and affordable housing; Raising the age for adult criminal responsibility to 18 years of age; Ending solitary confinement, the SHU, once and for all; More funding for comprehensive 36-hour police training around mental health called CIT (Crisis Intervention Team) training; and Opposition to Forced Treatment.
I was so excited this year because I got an old-style physical banner created, which read “Supportive housing saves lives, sign the MOU.” The MOU, memorandum of understanding, is a simple contract that the leaders of the NYS Senate, Assembly, and Government must all sign together. If they sign the MOU, $1.9 billion in housing funding gets released, creating 6,000 apartments. If they don’t sign the MOU, the money cannot be released for housing providers and new apartments will be much more difficult to build.
I held up the banner with a friend’s help when the elected officials were speaking in the auditorium and shouted, “Sign the MOU!”
I had some NYAPRS helpers hold up the banner when I spoke about housing on stage, and I carried the banner all around the NYS Capitol. I got some thumbs up signs from elected officials’ staffers, and a few snarls from NYS Security officers.
After listening to Harvey talk about the issues and hearing from some officials, some people went to a rally on the Capitol steps outside. Those attendees carried signs they made at home that read with slogans like “Ban the Box,” and, “There is no health care without housing,” etc.
Other attendees went into the Capitol and Legislative Office Building to visit with key elected officials.
I lead a team to visit some elected officials. My group spoke elegantly about all issues, but focused on housing and opposition to forced treatment. My group of attendees blew me away with how well they spoke. They were some of the most impressive advocates I’ve ever had the pleasure to help coordinate.
Now I am getting ready for the NYC Mental Health Film Festival. We are meeting as a group and screening films to see if the films are worth showing at our film fest.
If you want to join us, contact me, Carla Rabinowitz, crabinowitz@communityaccess.org or 212-780-1400 x7726.

Who’s Watching the Mental Health Providers?

Who’s Watching the Mental Health Providers?
By Warren Berke, Chair, NYC Department of Health and Mental Hygiene Community Advisory Board

Proper Customer Service Can Prevent a Mental Health Crisis
A functioning client with bipolar and anxiety disorders, of a well known mental health service provider in NYC, has to have his regulated drug prescription renewed every thirty days. Being responsible and knowing his need for the medication, he visits his provider and requests the renewal prescription one week prior to finishing up the current doses. The doctor informs him that he will send it electronically to his pharmacy.

Two days go by and the client does not get notification that the prescription is ready. The client calls his pharmacy to check and they inform him that they have not received the prescription. The client calls the provider. They inform him that the prescription will go out “right away.” The client checks with the pharmacy the next day; still no prescription. The client now has two doses of medication left, calls the provider, and is assured the prescription will be sent out. Client checks with the pharmacy the next day; no prescription has been received. With one dose left, the client begins to feel the symptoms of anxiety.

Another day goes by and the client is out of medication due to the non-performance of the provider. Client is getting very anxious, and, for the second time, goes to his provider on Saturday morning. He sees his doctor and is told by the doctor that the prescription will go out that day before the doctor leaves. Client checks with pharmacy early Saturday afternoon, and is told that the prescription has not been received. Client calls provider and is informed the doctor has left and will not be back until Tuesday. Client asks if another doctor can submit the electronic prescription. He is told it is not the provider's policy and to go to the emergency room to get the medication. Client is having an anxiety attack and physical discomfort, goes to the emergency room, waits two hours to request four doses to hold him over until his doctor returns on Tuesday. The doctor at the emergency room checks records and agrees, giving client one dose (Saturday night) and a paper prescription for three more doses.

It is Tuesday, eight days after the client requested the refill of the prescription. The client is informed that the doctor is not in until 5 pm. On the ninth day, the pharmacy receives the prescription.
The provider has failed to deliver the proper services to its client. By shirking their responsibility to provide good customer service, both the doctor and provider created both a human and financial toll.

The Human Toll: a client goes from wellness to crisis, not due to his mental illness, but due to poor customer service delivered by the provider and its doctor. The client had to invest 10 direct hours and three days of discomfort from anxiety, trying to receive the simple, basic service of a prescription refill.

The Financial Toll: the provider will be paid for two visits and the hospital will be paid for an emergency room visit and other services provided. One could speculate that the above services will be invoiced for a couple thousand dollars versus the much lower cost of one office visit, all due to the provider's poor customer service.
Is this an isolated patient experience or does this happen more often than we know? Mistakes happen, but for a provider to not correct the mistake and cause a series of events that result in a mental health crisis that wastes scarce mental health treatment dollars is grossly negligent. The State and City have sophisticated methods to evaluate the level and effectiveness of care being delivered to persons with mental illness. Providing good customer service should be a major part of that equation.  

Editor's Note: This article does not necessarily represent the views of City Voices, our readers, or the New York City Department of Health and Mental Hygiene. If you live in NYC and something similar has happened to you with your provider, you can call the Office of Consumer Affairs at (347) 396-7194.

Healing Voices Film Event

Healing Voices Film Event
By Lisa Roma, Reginald Coleman and Dan Frey
Informed Decisions to be Made by The Individual
Note: The film here reviewed deals in part with the subject of coming off of psychiatric medications. This is a controversial subject as, on the one hand, psych meds can do harm to the body. On the other, being without them can lead to poor judgment, psychological pain and dangerous situations. The staff and volunteers at City Voices strongly encourage you to do the research, talk to your doctors, your family and friends before deciding about whether to stay on meds. Do not attempt to get off meds on your own. This action requires a strong support system to buffer you in case of crisis. You have the human right to choose what goes into your body. However, we do not live in a supportive and understanding society. In the U.S. people who have shown signs of mental illness have been marginalized, feared, incarcerated and basic human rights have been taken away. If you do decide to ween off of medications, do it slowly under careful supervision even if it takes years. Maybe you will find that remaining on the medication is best, perhaps at a more comfortable dose.
On April 29, 2016 we viewed Healing Voices, a documentary about people who experience extreme states of consciousness usually labeled as “psychosis” or “mental illness” by the medical establishment and the effort to preserve their human rights and dignity.
For many people hearing voices is a part of their life experience. The film offers a fresh perspective, exploring how to accept and love people who experience extreme states, rather than stigmatize, label, and medicate them, which can do more harm than good. Hearing voices is a normal human experience, a “dangerous gift” that many of history's movers and shakers experienced. It is how people respond to the voices that brings them into contact with services and not the fact that they hear voices.
“Mad in America” author Robert Whitaker chronicled society's shifts in perspective of people diagnosed as mentally ill. Each shift led to a different type of treatment. In the colonial days of the late 1700s, the Age of Reason, those who lost their reason were seen as less than human, abused, and treated like animals. Then came reforms in treatment led by the Quakers who viewed the mentally ill as brethren and were compassionate with their care-giving. In the late 1800s there were eugenic attitudes, forced sterilization, marriage prevention and long-term hospital stays. In 1950, Thorazine was introduced, which was essentially a straight-jacket in pill form. Today, pharmaceutical drugs dominate treatment. Mr. Whitaker said, “What we are really treating is our own desire to be safe. Madness is a mystery. If you conceive of people as brethren, that's a great starting point.”
The film follows three subjects over a five-year period—Oryx, Jen and Dan—each of whom are learning to live with extreme states of consciousness, hearing voices, etc. without psychiatric medications. They all belong to loving families and have steadfast friends in their support systems. Oryx and Jen are both married with children and have been there for one another through times of crisis. Dan's mother and friends have been his constant support. Dan said he feels more alive and vibrant without psych meds.
In 2013, the director of the National Institute of Mental Health (NIMH), Thomas Insel, M.D., concluded that people diagnosed with schizophrenia and other psychoses are a diverse group who need diverse approaches. Dr. Insel acknowledged in his Director's Blog, “For some people, remaining on medication long-term might impede a full return to wellness.”
Healing Voices declares that psychiatric survivors have the right to choose what is best for themselves in their own recovery, encourages people to share their stories and support one another. Judi Chamberlin, mental health advocate and activist, says, “People have a story to tell. Support each other by listening to these stories. Trauma exists. People should have a choice in their recovery.”
There are significant cultural factors that influence one's decision to stop taking psychiatric medications (and society's response to this decision) that are not adequately explored in the film. However, projects like Healing Voices are needed to push boundaries  and create opportunities for ongoing dialogues.
DVDs or streaming video can be purchased at healingvoicesmovie.com/store. Other online resources include www.facebook.com/alternativesconference, www.mindfreedom.org, and to find a hearing voices group: www.hearingvoicesusa.org/find-a-group.

Police Training and Community Diversion Centers

Police Training and Community Diversion Centers
By Carla Rabinowitz, Advocacy Coordinator, Community Access
Progress Report on Implementing Crisis Intervention Teams in NYC
Relations between the mental health community and the New York Police Department (NYPD) are improving through work to implement Crisis Intervention Team (CIT) training for officers. CIT is a method of policing that prompts police officers to use appropriate tools to respond to incidents involving people in emotional distress. CITs ensure safe and respectful interactions between people experiencing a mental health crisis and law enforcement.
CITs are needed because the NYPD responds to 150,000 calls of those in mental health crisis a year. They call these calls EDPs(Emotionally Disturbed People calls). Progress has been made to train officers in effective handling of mental health crisis, but more must be done to impact NYPD response methods and build opportunities for diversion from the jail and hospital system.
Many officers now still respond to EDPs in a command and control approach based on their standard training. The primary way NYPD officers still try to gain control of a situation is by getting compliance from the person in distress by using force.
But that is all changing due to the work of Community Access and other members of the Communities for Crisis Intervention Team Coalition (CCIT), www.CCITNYC.org .
The NYPD has agreed to train 5,500 officers in a 36-hour training that supports police personnel in understanding the tools they need to use to effectively address those in mental health distress. So far, 300 NYPD officers have been trained using the model pioneered by the city of Memphis, TN in 1988.
But CIT is more than just training of police. CITs require coordination between the public health system, police departments, and the mental health community.
In addition to training, the NYPD—under the guidance of the NYC Department of Health and Mental Hygiene—is creating a small demonstration project pairing 10 teams of social workers and NYPD to work together. These teams will ride to shelters and other locations together as a co-response team.
The NYC Department of Health and Mental Hygiene (DOHMH) invited a few mental health service recipients to speak to the newly hired social workers on the co-response team. One of our main priorities continues to be that DOHMH and the NYPD go further and hire actual mental health peers to advise police.
The group of mental health leaders invited to the process also advised the co-response team that when they need to take a mental health recipient to the hospital, they might encounter a lot of resistance. Some mental health recipients, especially when they are in distress, will object to being taken to a hospital. Some recipients have had traumatic experiences at hospitals or just do not like being locked up. We advised the social workers that they will need to improve their de-escalation techniques for those people for whom a hospital is a place they dread.
The recipients at the planning meeting also advised the social work co-response teams that offering something to eat or drink or a blanket is a good gateway to a conversation with a person in distress.
The team also indicated to the co-response team the importance of being careful from where they receive information about the person in distress. We explained that talking to neighbors about a mental health recipient might not be the best idea as community members often harbor prejudice against mental health recipients. We also suggested that the co-response team be similarly cautious in talking with family members; some of us believed family members could offer information on the person in distress, but others felt family members could be the triggers for a mental health recipient, especially when the recipient is in distress.
This DOHMH co-response pilot project is exciting but not new. Houston employs a similar co-response team and has done so for 15 years. Many other cities have implemented similar teams that pair peers or clinicians with police officers, or established centralized communication centers where officers can access health information or access to treatment options.
Most importantly, CCIT continues to advocate for city-wide diversion centers where police can quickly drop off people in crisis and return to other police calls. The Mayor and DOHMH have promised to build two diversion centers but unfortunately those centers have not yet been procured or established.
These diversions centers are an essential part of a CIT response. Officers need a place to quickly drop off a person in distress or the officer will take the person into custody. A diversion center is less time-consuming and less expensive than time in jail or in the hospital, and there is evidence that diversion greatly benefits both the recipients and police officers. Currently, even the best-intentioned NYPD officers have no other choice but to take a mental health recipient to a hospital or retain them in another type of custody.
These promised diversion centers are slated to have complete mental health and drug addiction services. They will be open 24/7 and connect those being brought by police to community supports. Unlike hospitals, the focus of the diversion centers is to connect people in distress to outpatient services, a place they can apply for housing, a clinician they can talk to immediately, and other resources known to mental health community organizations. And we are assured peers will play a role in these diversion centers.
The CCITNYC coalition remains hopeful and vigilant that the NYC Mayor’s office invests resources in building diversion centers as an integral part of the CIT approach. We commend the efforts of the Mayor’s office, DOHMH, and the NYPD on their efforts thus far in supporting the best interests of New Yorkers who experience mental health crisis and emotional distress. We look forward to working together with all stakeholders into the future as CIT is expanded and enhanced with community supports.
If you are interested in upcoming events with the CIT Coalition in NYC, CCITNYC.org, please contact me at crabinowitz@communityacccess.org or 212-780-1400 x7726.

NYC Advocates Joined NYAPRS for Legislative Day in Albany

NYC Advocates Joined NYAPRS for Legislative Day in Albany

By Carla Rabinowitz, Advocacy Coordinator and Briana Gilmore, Director of Planning and Recovery Practice, Community Access

Requesting Housing and Criminal Justice System Reform

On Tuesday, February 23, 2016, hundreds of community members from across New York City travelled to Albany to advocate on behalf of the mental health community. The advocates joined NYAPRS, the New York Association of Psychiatric Rehabilitation Services, as it convened its 19^th Annual Legislative Day.

A Legislative day is when a group of people advocating for a cause gather at the Capital and educate elected officials.

NYAPRS focuses on statewide advocacy for the promotion of rights and recovery for people who have been a part of the mental health system, as well as those who have also had experiences with substance abuse, homelessness, and the criminal justice system. NYAPRS members meet with New York State Senators and Assembly Members on Legislative Day to discuss needed reforms.

The trip from NYC to Albany is fun itself, as hundreds of people travel by bus together, sharing stories and excitement about the day.

Then once in Albany, attendees meet in a very large auditorium called The Egg. NYAPRS leaders introduce key issues, celebrate progressive legislators working toward mental health reform, and remember past legislative victories. After coming together over the issues we share as a community and we break into small groups to meet with legislators.

This year, the biggest priorities for NYAPRS were some of the social issues that intersect the lives of people with mental health needs, specifically housing availability and criminal justice system reform.

NYAPRS advocates urged Governor Cuomo and Mayor de Blasio to sign a new NY/NY IV agreement to ensure a multi-year commitment between city and state for the supportive housing needs of our community. In addition, we advocated for a $92.9 million statewide housing readjustment rate for housing providers to ensure they can sustain quality service operation and safe, updated facilities.

Mental health advocates joined NYAPRS in advocating for our brothers and sisters in jail and prison and for their needs when they are released. Reforming jails and prisons is imperative to the well-being of our community members. This year NYAPRS focused on Presumptive Medicaid, which would guarantee a person leaving jail or prison Medicaid eligibility for the first 90 days. Currently, a person leaving jail or prison has had their Medicaid eligibility suspended and can’t immediately access health care, including medications.

Importantly, NYAPRS prioritizes diversion from jail or prison, particularly in the case of mental health crisis that contribute to incarceration of our community members. We advocated for the expansion of Crisis Intervention Team training, which is a comprehensive method to teach police officers how to respond to people in distress. The 40-hour training equips officers with skills to identify and de-escalate the effects of a mental health crisis. NYC is currently committed to training 5,500 officers, but the need is for 10,000 trained officers; we advocated for an increase in trained officers to meet the city’s needs.

We also advocated for additional funding for supportive community services. NYAPRS initiated a $90 million request to sustain community infrastructure and expand technological resources. Behavioral health providers are not fully equipped to navigate some of the financial reforms implemented by the Department of Health to make the Medicaid system more efficient. This money would support providers in preparing to better support participants.

NYAPRS advocates also sought $50 million reinvestment from savings gained by the shift to Medicaid Managed Care, and $5.5 million from the closing of hospitals. We advocated for the reinvestment of these funds into community settings, to continue to prevent the need for hospitalization and prioritize community integration.

One excellent example of community reinvestment funding in the 1990s was the Community Access Howie T Harp training program. This peer run program trains mental health service recipients to work as peer specialists or in the human service field. The program has promoted over 1,000 NYC community members in pursuing workforce goals and continues to provide options for people with mental health system experiences.

Many people have the perception that individual advocacy with elected officials does not matter, but that’s not true. Ten years ago, Community Access helped to arrange speakers for advocacy to end solitary confinement in prisons for people with mental health treatment needs. We thought we would wow elected officials with experts, including a speaker from the United Nations, Amnesty International, and top lawyers from the American Civil Liberties Union. We also brought one family member of a person with mental illness living in solitary.

After the public hearing where these speakers delivered testimony, we met separately with the legislator chairing the committee. They asked by name for the family member who testified at the hearing. The voice of a family advocate was the only voice they remembered from a four-hour hearing. Personal testimony matters, and always leaves an impact on elected leaders.

The most important thing to remember when you speak to an elected official is speak from the heart and convey how your personal story relates to what issue you are seeking to change. Honesty and commitment often translate to influence with legislative leaders.

Consider joining us in monthly meetings to discuss news about mental health issues from across the state and country with the NYAPRS NYC chapter.

To get involved with NYAPRS, call Carla Rabinowitz at 212-780-1400 x7726, or crabinowitz@communityaccess.org

The Right Perspective is Everything

The Right Perspective is Everything

By Allan

I Enjoy My Senior Years By Helping Others

At the age of forty, job related stress brought on my first episode of major depression. Since 1980, I had been diagnosed with bipolar 1 and have had seven breakdowns requiring electro-convulsive therapy.

My last event was four years ago, and today I am in full recovery, not cured, but able to fully function. I attend support group meetings at NAMI and Recovery International. I believe my acquired coping skills and new positive attitude allows me to not dwell on the past, which is subject to interpretation, nor the future, which is unknown, and to focus on the present.

For thirty years, I was able to work on Wall Street. I've been married 51 years, have two grown children and four grandchildren, despite my recurrent illness. Bipolar has made me sensitive to the plight of others, more understanding and appreciative of the people in my life.

When I am well, I think back to the darkest days of my life, and when I am ill, I remember how I overcame the nightmare that is mental illness seven times. If my dark days return, I know that with treatment I can survive.

My recovery has been reinforced by my advocacy efforts. As a member of JAC NYC (Jails Action Coalition), I fight to end solitary confinement, especially for those with mental illness, and I am active with RIPPD (Rights for Imprisoned People With Psychiatric Disabilities), which fights for Community Crisis Intervention Teams.

In 1990, after 30 years of employment at a major firm, I was downsized and told that my position was being eliminated due to the recession in the economy. When I responded that I had seniority and they were keeping younger people on the job with less seniority than I, they said seniority only applies to union workers. So much for loyalty in the capitalistic system. I sued under the Employment Disability Laws and was eventually given long term disability and Social Security Disability.

Not working was a shock for me. Having a schedule each day, putting on a nice suit, white shirt and tie, working alongside fellow workers, engaging them in conversation about sports, current events , their children involved in Little League baseball, was no longer available. I had to find other dreams and outlets that provided me with involvement.

I am now a speaker for MHA and last month I made a presentation at Bellevue for consumers such as myself. My biggest happiness is seeing other consumers who have struggled to cope with their new life eventually helping others in the support groups I attend. They help, not with advice, but by relating how under similar circumstances they found out that "eventually every problem has a solution."