Return Our Sanity Through Timely Treatment

Return Our Sanity Through Timely Treatment
By Jane
People with Stable Minds Can See Illness for What It Is

It's the day after the Newton Children’s Massacre and I want to say something as a mentally ill person. I have had bipolar disorder all my life. I have been successfully treated for the illness for 23 years. Since then I have done extensive research on the disorder and written four books on the subject. I have developed opinions on the way treatment is given (and withheld) in this country.

Mentally ill persons are the most discriminated persons in the country. They can easily be fired from jobs (“she just wasn’t capable of doing the job,” instead of the truth—we were afraid of having a mentally ill person around).

When people find out about their illness, they lose friends and sometimes are blackballed from organizations. A mentally ill person has to be careful with what he or she says and does at all times, so as not to trigger stigma.

At the same time, access to treatment has been made difficult. In the past few years, states have cut access to mental health treatment by limiting the illnesses they will treat. In my own state, mental health clinics will only treat those with schizophrenia, depression, and bipolar disorder. No other illnesses are eligible.

In the past year, I was cut from the program after five successful years with the same psychiatrist because I was “too stable” to receive treatment any longer. And I am a person who actively seeks treatment, demands it, and insists that I always have my medication, even if it means an ER visit to get it.

What about those who resist treatment? Those like the school, theater, congress-people, and mall shooters? The profile invariably shows that they did not seek treatment, that they refused it. Often it is found that a parent tried many times to get help for their child, but was turned away because he was not a danger to himself or others—yet.

Read Pete Earley’s book Crazy, in which he describes his efforts to get help for his bipolar son. He found that most mentally ill people are not in institutions, but in jails or prisons, because they did not get help when they needed it, but the criminal justice system intervened after they had acted out.

What about a person’s right to be healthy? We don’t leave sick people lying on the street to die. We deliver them to the hospital to be healed. What about a person’s right to not be mentally ill? They are in no shape to make a decision as to whether or not they should receive treatment or medication. They have a right to be treated. The “freedom” we allow people to have in our country to be mentally ill is illusory and has nothing to do with real freedom. These are chains that bind and hold a person even as they declare their own freedom.

Treat the person—return him or her to sanity—then let the person decide whether or not they wish to be ill. Then, and only then, are they capable of making such a decision. We need to upgrade our mental health system and to change our laws to deal with the reality that is mental illness and to truly help the helpless.

Mobilization for Justice Helps Nursing Home Residents Live More Independently

Mobilization for Justice Helps Nursing Home Residents Live More Independently
By Daniel A. Ross, Senior Staff Attorney, Mobilization for Justice, Inc. (Formerly MFY Legal Services)

Mobilization for Justice (MFJ) offers nursing home residents advice and representation on a wide range of legal matters. MFJ’s Nursing Home Residents Project continues the work of Friends and Relatives of the Institutionalized and Aged (FRIA), which provided information and advice to nursing home residents and their families for 35 years.

Callers to the Nursing Home Residents Project’s intake line receive advice about residents’ rights, decision-making, Medicaid and Medicare, and discharge planning. We also represent individuals in administrative hearings and litigation to preserve their apartments in the community, obtain home care, and protect residents’ rights.

For example, one of our clients, Ms. L, is a nursing home resident in Far Rockaway. She wanted to attend her granddaughter’s graduation ceremony in the Bronx. She contacted us when the nursing home refused to approve a day pass. MFJ filed a lawsuit that forced the nursing home to allow her to attend the graduation. Ms. L explained that a day pass “is important because it helps me relax, gives me something to look forward to, allows me to visit my family and reconnect with friends.” We published a report about this widespread problem called Imprisoned in Their Homes.

In another case, Medicaid denied rehabilitation services for Ms. H, a nursing home resident who wanted to return to her apartment. MFJ successfully challenged the denial so she could receive additional therapy. She’s looking forward to returning home.

MFJ also advocates for residents who need help getting discharged from a nursing home. While Ms. G was in a nursing home, her landlord had illegally evicted her from her apartment. MFJ forced the landlord to provide her with another apartment. We also helped her obtain the home care and other services she needed to succeed in the community.

MFJ tracks trends in the complaints we receive to support policy advocacy and impact litigation. With pro bono help from Patterson Belknap Webb & Tyler LLP, we represent plaintiffs in a class action case against the Department of Health. The lawsuit alleges that many nursing home residents have waited years for services from the Nursing Home Transition and Diversion Waiver Program. The plaintiffs are among thousands of New Yorkers who remain trapped in nursing homes, when they could be receiving the care they need in their own homes.

MFJ hosts the Alliance of New York Family Councils (ANYFC). ANYFC is a group of leaders of nursing home family councils who share information and advocacy strategies to ensure their loved ones receive quality care. We also present trainings for the Long-Term Care Ombudsman Program and provide technical assistance to lawyers and other advocates.

In 2012, MFJ revised FRIA’s guide for residents and families, Nursing Homes and Alternatives. Called “the bible of long-term care for the elderly and their caregivers,” this book has been used by many families to ensure that their relatives receive the care they deserve in nursing homes. MFJ also developed short fact sheets on common problems faced by nursing home residents and their families, including residents’ rights, visitor policies, involuntary discharge, and medical decision-making.

For assistance with a legal problem affecting a nursing home resident, call MFJ’s Nursing Home Residents Project on Tuesdays between 10:00 a.m. and 5:00 p.m. at 855-444-6477.

Criminal Justice Forum Reveals New Information and Old Problems

Criminal Justice Forum Reveals New Information and Old Problems

By Carla Rabinowitz, Advocacy Coordinator, Community Access, Project Coordinator, Communities for Crisis Intervention Teams in NYC (CCINYC)

Community Asks Its Leaders, “What Is Taking So Long?”

The Daily News, The Greenburger Center for Social and Criminal Justice, and Metro Industrial Areas Foundation(IAF) hosted a forum on diverting people with mental health concerns away from the criminal justice system.

The February 14, 2018 forum was actually the 4^th in a four-part series.

The focus of the last forum was Crisis Intervention Team training and catching people at the first intercept. An intercept is a step where people encounter the criminal justice system. There are 4 intercepts:

·         Intercept 1 is on the streets, where people meet police;

·         Intercept 2 is from arrest to disposition;

·         Intercept 3 is diverting people when they are in jail away from longer sentencing; and

·         Intercept 4 is release and re-entry.

In attendance were some heavy hitters in the field of mental health and criminal justice. There was Dr. Gary Belkin, Executive Deputy Commissioner of the New York City Department of Health and Mental Hygiene(DOHMH), Commissioner Elizabeth Glazer, Director of the Mayor’s Office of Criminal Justice, and NYPD Commissioner James O’Neill.

A large part of the planning for this event centered not only on what the police are doing but what the Mayor is doing to find solutions to the recent string of nine police shootings of New York City residents with mental health concerns during crisis calls, or Emotionally Disturbed Person(EDP) calls.

In 2014, Mayor de Blasio convened an impressive Taskforce to look into all the intercepts where people with mental health needs encounter the criminal justice system. Many city agencies and health care providers were on that Taskforce. Each stage of encounter—intercept—had a committee.

I was on the Taskforce committee that strategized about Intercept 1. We brainstormed for a year and came up with the recommendation to train police about how to respond to those in emotional crisis and to build two drop-off centers where police could take people in distress, now known as diversion centers.

At the meeting in February, Elizabeth Glazer was asked about whether Mayor de Blasio would revive his Taskforce on Criminal Justice and Behavioral Health.

Glazer did not publicly answer the question. But as I caught her walking out the door she said the Mayor was working on something, maybe not what we want, but some version of a Taskforce.  But politicians always say that.

Dr. Gary Belkin was grilled on why DOHMH has not yet built the two diversion centers promised in 2014. Dr. Belkin noted that Project Renewal and Samaritan Day Top Village were awarded contracts to build the diversion centers recently. But the questions are still: where will they find the land to build the massive diversion centers? And how long will the construction take? No timeline has been given.

Commissioner O’Neill was asked many questions and hit with many concerns, as one might imagine. To his credit, the Commissioner answered all questions and remained after the end of the Forum to speak to people.

Commissioner O’Neill admitted that most EDP encounters occur quickly. He noted one shooting occurred in the first 17 seconds of officers being on the scene. Usually experts say the first 3 to 4 minutes is where violence occurs.

Many people asked about non-police alternatives to answering the crisis calls.

Surprisingly, O’Neill stated that Staten Island is piloting a program where some 911 calls get screened to determine if police are needed or if social workers can field the call instead. Little is known about this program to anyone. This program was not mentioned in the quarterly NYPD advocate meetings I attend, nor is DOHMH staff familiar with this program.

Instances of projects being hidden like this show the need for the Mayor to bring a Taskforce back together to look at alternatives like this, and at least to issue reports to the public on what is already being done.

Beyond the Medical Model with Neesa

Beyond the Medical Model with Neesa
A Column by Neesa Sunar, Peer Specialist, Transitional Services for New York, Inc.
Changing the Language That is Used to Describe Us

Many of us who find ourselves in the mental health system have shared experiences as to how we got there. To speak on my own experiences, I first displayed “maladaptive,” saddening symptoms as a teen, which then led to my first hospitalization at around my fourteenth birthday. I was diagnosed with clinical depression and medicated with Zoloft. Upon returning to school, I labeled myself as “depressed,” which elicited within me a negative worldview amongst my classmates. My experiences with mental illness seemed alien to them, so my label further served to summarize my failures in forging meaningful friendships.

My condition turned for the worse when I developed schizoaffective disorder in my early twenties. Again, this diagnosis became a box I fell into, deeming me a “schizophrenic.” Adopting this label as a self-descriptor caused me to feel broken in mind and character. And even as I remained compliant with medications and psychiatric appointments, I continued relapsing, causing me to believe that my schizophrenia would haunt me for the rest of my life. Thus, the label seemed inescapable, thus sadly accurate.

My inability to work caused me to file for disability, which was an incredibly freeing experience. I began openly disclosing my illness to anyone who would serve as an audience, and even felt proud that my struggles had a name, instead of being some amorphous spiritual curse. At the same time, the label of “schizophrenic” still caused people to distance themselves from me. Perhaps my label served as a threat, indicating that I had lying dormant within me a sense of criminality.

When discovering the peer movement in 2014, beginning as a student at Howie the Harp Advocacy Center, I learned that I had been entrenched in the Medical Model for my entire mental illness “career.” I realized that I had completely internalized and unconditionally accepted the top-down dynamics of the therapeutic relationship between practitioner and consumer. I absorbed that my mental illness diagnosis served as a label that indicated who I was and the future trajectory for the remainder of my life. And that all this was an injustice.

I became appalled that I had never even heard of the Recovery Model as a counter to the Medical Model. Even in this massive city of New York, brimming with resources, I had never encountered peer specialists or Recovery Model enthusiasts. How could this be? Many of the peers I have since met proudly disown their diagnoses as descriptors, instead using more affirming language such as, “I am a person with schizophrenia,” or “I have past lived experience.” The peer community is a group of vibrant people with dynamic personalities, free from such labels. Bearing this perspective, we flourish and grow in our own recovery journeys as we influence and support one another.

Many of us peers are compelled to take action as mental health advocates in our communities. When we fight for widespread awareness of peers and the Recovery Model, we hope to challenge people in reevaluating their perspectives of those with mental illness. Part of our advocacy efforts should also include the request for creating alternative language that is person-centered, trauma-informed and affirming. A person “suffers from” or “experiences” mental illness and is not the illness itself. And what defines mental illness anyway? Descriptive words such as “crazy,” “insane” or “dysfunctional” also serve to obscure the personhood of one suffering. When insensitive language is used, a person can internalize this and develop a sense of shame and fear. This can prevent a person from reaching out to friends, family, and/or professionals. In the worst of situations, such silence can end in immense and irreversible tragedy.

As we advocate for change in language, we must also recognize that each individual has their preference for how they should be regarded. Some people prefer to be called “disabled,” while others eschew the term. Other terms can be preferred as well, such as “mentally ill,” “other-abled,” “neurodiverse,” “chronically ill,” “in remission,” or simply “a human being.” In the same way that the transgender community has fought for preferred pronouns, so too should we demand that mainstream society develops interest in engaging the mental health community with respectful language.

We each have our individual journeys towards recovery, as we leave behind our pasts to walk towards a bright future. The hope and vision that guides us in this process can be the foundation on which we stand, as we fearlessly share our stories of recovery. Part of our stories can include how we have reclaimed our lives by adopting affirming language. If we are able to incite curiosity in our audiences, we may enjoy immense success in this endeavor.

Nine Dead in Two Years in NYC and No One is Listening

Nine Dead in Two Years in NYC and No One is Listening 
By Carla Rabinowitz, Advocacy Coordinator, Community Access, Project Coordinator, Communities for Crisis Intervention Teams in NYC (CCINYC)
The Mental Health Community Demands Change

On Friday, February 23rd, 2018, dozens of community members gathered to mourn the lives of people lost in NYPD encounters in the last two and a half years.

At the memorial, we talked about the need to get the newly trained Crisis Intervention Team (CIT) officers to the scene of crisis calls.

We talked about the need for Mayor de Blasio to revive an old 2014 Taskforce to come up with other alternatives to police responding to these calls. Whether it is diverting calls to social workers or therapists to meet police on the scene, or trained peers responding in the community. We need alternatives to police responding to crisis calls.

But mainly it was a day for family, friends, and the community to mourn our nine losses.

We read the names of each life lost, and after each name was read, we popped a black balloon to signify their death.

Steve Coe, CEO of Community Access, implored the Mayor to revive the Taskforce, get all the experts in the room to figure out what is working, what is not working, and to fix this.

Below is my speech in full. At the memorial we spoke, and here we print the names of our community members so that we can remember them:

“Mario Ocasio was killed June, 2016. He was 51 years old. Mario was an uncle and a boyfriend. Mario, you are missed.

“Rashan Lloyd was killed June, 2016. Rashan was only 25 years of age when he died. Rashan was a construction worker and Rashan was raising his 4-year-old son. Rashan you are missed.

“Deborah Danner was killed in October, 2016. Deborah was well known in both the mental health and faith communities. Deborah was a regular member of Fountain House, a clubhouse in NYC. And Deborah was a long timelong-time member of Trinity Church. She participated in the poetry and knitting groups. Deborah predicted her own death at the hands of police on a blog she wrote. Deborah you are missed.

“Dwayne Jeune was killed July, 2017. Dwayne was a Caribbean immigrant. He died at 32 years of age. Dwayne was a devoted son, who often helped his mother with groceries and could sometimes be found dancing in front of a mirror in the hallway outside his apartment. Dwayne’s cousin said Dwayne was a soft-spoken, mild-mannered person who never bothered anyone. Mr. Jeune you are missed.

“Ariel Galarza was killed November 2016 when police mistook a hot sauce bottle for a knife. He was 49-years-old when he was killed. Ariel was described as a peaceful, hardworking man. Ariel was a role model for his nephews and loved dearly by his little sister. Ariel you are missed.

“Andy Sookdeo died in August 2017. He was only 29 years old. Andy took his own life when confronted with police. Andy had been a school bus driver before things fell apart. Not only did Andy die in this encounter, but police were injured as well. Andy, you are missed. 

“Miguel Richards was killed in September, 2017. Miguel was a college student from Jamaica living in NYC in an exchange program. He died at 31 years of age. Miguel was an IT expert with a bright future. Police had 17 minutes to talk Miguel down using de-escalation skills, but instead they just shouted commands at him, telling him they would shoot him if he did not comply. Maybe that’s what Miguel wanted at that moment. Miguel you are missed.

“Cornell Lockhart was killed in November, 2017. He was 67-years-old when he died. Lockhart had lived in a supportive housing residence for six years before his death. When police shot him, Cornell’s arms were down at his side and his back was against a wall. Cornell you are missed.

Dwayne Pritchett was killed in January, 2018. Dwayne was 48 years of age at his death. Dwayne was a barber. He was raising his 3-year-old son with his female partner., but left to live with his father about a week before his death. Mr. Pritchett you are missed.

Let these lives lost not be in vein. Let’s strengthen our resolve to continue the work to find new solutions to crisis calls that so many people in the mental health community face.

We demand the Mayor revive his Taskforce to find non-police responses to crisis calls before one more life is lost.

After Things Go Wrong Sometimes Amazing Things Happen

After Things Go Wrong Sometimes Amazing Things Happen
Book Review by Carl Blumenthal
Some Stories Have No Ending

How many of us could survive one day in New York City’s notorious Rikers Island Jail, given we have behavioral health issues? Wouldn’t admission to a psychiatric hospital be safer and more therapeutic? 

Until recently I worked as a peer counselor in the psychiatric ER of Brooklyn’s Kings County Medical Center. I admit that I approached with caution what the police call “emotionally disturbed individuals” (EDI’s) charged with crimes. Even with one wrist handcuffed to a gurney, they were liable to react aggressively. Unfortunately, the sooner they calmed down and went to Rikers, the sooner our staff could focus on less agitated patients.

Having “done time” on psychiatric units as a non-forensic inpatient, I expected a lot more heartbreak than hope in psychiatrist Elizabeth Ford’s Sometimes Amazing Things Happen: Heartbreak and Hope on Bellevue Hospital’s Psychiatric Prison Ward (2017). I was surprised to discover a role model who all mental health providers should copy. 

Due to the revolving door between Bellevue and Rikers—the hospital has 68 beds to treat the most distressed of 5,000 inmates with mental illness—she admits, “I have come to see my success as a doctor not by how well I treat mental illness but by how well I respect and honor my patients’ humanity, no matter where they are or what they have done.” 

Ford shines a light not just on the jail’s insufferable conditions but also on prisoners’ lives that are too often defined in psychiatric and legal terms. The list of their challenges—addiction, homelessness, poverty, illiteracy, racism, etc—is as long as an indictment. To paraphrase African American psychologist, Amos Wilson, these men have learned to be the best at doing the worst. 

Ford proves one wo(man) can make a difference by never giving up on her patients even when society has cast them aside. And they do their part merely by surviving. As one peer tells another in group therapy, “You are worth it, man. You got mad courage. You just hang on and keep going one day at a time. That’s all you got to do.” 

Elizabeth Ford may never have taken a course in conflict resolution, but she’s a natural at calming potentially (self-) abusive patients and keeping the peace among staff—mental health providers and corrections officers alike. Even as she climbs the career ladder, there is always someone telling her what to (and not to) do. Yet she’s not afraid to speak truth to power. 

Her calling is to assume more and more responsibility for events others consider beyond their control, in the end becoming the current head psychiatrist of the city’s correctional health services. She prefers the intensity of working with psychiatric inmates than other populations in other settings. 

For example, Ford is in her glory (or God’s), when, like a modern-day Noah, she evacuates the prisoners to an upstate hospital during super storm Sandy and finds refuge elsewhere for those re-housed on Rikers Island, where she discovers just how poorly those with mental illness and substance abuse are treated.

Is Elizabeth Ford too good to be true? Except for a few moments of self-congratulation, burnout seems to be her only shortcoming, but that’s because she cares too much. Her family and therapist keep her on an even keel; she recognizes her racial, social, and economic privileges. And there are events out of her control, such as the beatings, murders, suicides, and escapes she learns about second-hand. 

Ford’s memoir has the pace of a well-directed movie with enough drama to satisfy the most avid consumer of stories about abuses at mental hospitals. Her prose is straight-forward. Her eye for detail demonstrates the mindfulness necessary to survive amidst daily trials and tribulations. She enables us to witness what others can’t or refuse to see.    

Thus, it’s the small blessings that give her and us hope: A phone call home by a scared teenager, a grungy prisoner’s unexpected shower, proper clothes for a court appearance, a sing-along in community meeting, ping-pong on a makeshift table, and a patient forgiving a doctor’s mistake. 

She concludes Sometimes Amazing Things Happen with these words: “A story without an ending is still a story worth telling.” Meaning these are snapshots of lives—sometimes like our lives—that we must honor, no matter how difficult to appreciate. 

Yet, much as she treats our peers humanely, Ford doesn’t hesitate to use both diagnostic labels and psychiatric medication for what she believes is our own good.

Based on my experience in the psychiatric department at Kings County, I now see the language is a shorthand and the meds are shortcuts to get people out of the hospital as quickly as possible. (After all, who wants to be confined in a mental hospital?) It may be only with long-term community services that peers have a better chance to educate clinicians.

I volunteer for the American Friends (Quaker) Service Committee’s Prison Watch to end solitary confinement, which causes and worsens mental illness. Agencies such as CASES, the Fortune Society, and the Osborne Association now rely on peer specialists to connect with ex-prisoners living with behavioral health challenges. I recommend that readers of City Voices get involved in these efforts if not doing so already.

Mobilization for Justice Helps Nursing Home Residents Live More Independently

By Daniel A. Ross

Mobilization for Justice (MFJ) (formerly MFY Legal Services) offers nursing home residents advice and representation in a wide range of legal matters.  MFJ’s Nursing Home Residents Project continues the work of Friends and Relatives of the Institutionalized and Aged (FRIA), which provided information and advice to nursing home residents and their families for 35 years.  

Callers to the Nursing Home Residents Project’s intake line receive advice about residents’ rights, decision-making, Medicaid and Medicare, and discharge planning.  We also represent individuals in administrative hearings and litigation to preserve their apartments in the community, obtain home care, and protect residents’ rights. 

For example, one of our clients, Ms. L, is a nursing home resident in Far Rockaway.  She wanted to attend her granddaughter’s graduation ceremony in the Bronx.  She contacted us when the nursing home refused to approve a day pass.  MFJ filed a lawsuit that forced the nursing home to allow her to attend the graduation.  Ms. L explained that a day pass “is important because it helps me relax, gives me something to look forward to, allows me to visit my family and reconnect with friends.”  We published a report about this widespread problem called Imprisoned in Their Homes.

In another case, Medicaid denied rehabilitation services for Ms. H, a nursing home resident who wanted to return to her apartment.  MFJ successfully challenged the denial so she could receive additional therapy. She’s looking forward to returning home.

MFJ also advocates for residents who need help getting discharged from a nursing home.  While Ms. G was in a nursing home, her landlord had illegally evicted her from her apartment.  MFJ forced the landlord to provide her with another apartment. We also helped her obtain the home care and other services she needed to succeed in the community. 

MFJ tracks trends in the complaints we receive to support policy advocacy and impact litigation.  With pro bono help from Patterson Belknap Webb & Tyler LLP, we represent plaintiffs in a class action case against the Department of Health.  The lawsuit alleges that many nursing home residents have waited years for services from the Nursing Home Transition and Diversion Waiver Program.  The plaintiffs are among thousands of New Yorkers who remain trapped in nursing homes, when they could be receiving the care they need in their own homes.

MFJ hosts the Alliance of New York Family Councils (ANYFC).  ANYFC is a group of leaders of nursing home family councils who share information and advocacy strategies to ensure their loved ones receive quality care.  We also present trainings for the Long-Term Care Ombudsman Program and provide technical assistance to lawyers and other advocates. 

In 2012, MFJ revised FRIA’s guide for residents and families, Nursing Homes and Alternatives.  Called “the bible of long-term care for the elderly and their caregivers,” this book has been used by many families to ensure that their relatives receive the care they deserve in nursing homes.  MFJ also developed short fact sheets on common problems faced by nursing home residents and their families, including residents’ rights, visitor policies, involuntary discharge, and medical decision-making. 

For assistance with a legal problem affecting a nursing home resident, call MFJ’s Nursing Home Residents Project on Tuesdays between 10:00 a.m. and 5:00 p.m. at 855-444-6477.