Tuesday, March 6, 2018

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.

Friday, December 15, 2017

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. 

How a Car Accident Saved My Life

Do You Have An X-Ray To Prove It?

I’m 47 years old, was diagnosed with bipolar around age 25 and ADHD at age 44. Last week I learned that I have the triad: bipolar, ADHD and OCD. For twenty-four years after college I held nine jobs before I became disabled at the age of 44. 

Receiving a diagnosis didn’t change who I was, but it explained a lot. I was overwhelmed yet empowered by the information. I was always told that my behavior, thoughts and words were wrong, and I agreed. I was taken to the doctor twice in my teens for being depressed. Both doctors just said to relax. Now I want to scream from the highest peak, “I have the answer! Maybe now I can change!” But, that’s not how everyone else saw it. Some of the first responses I got were, “Do you have an x-ray to prove it?” and, “The doctor is just trying to get money out of you. Stop taking the medication.”

One of the first aggressive episodes that I can remember was at age 13. I punched a boy and he fell to the floor. I remember an incredible feeling of uneasiness beginning that school year. 

Sophomore year in high school I punched the kid sitting in front of me. My moods were very erratic. I was a quiet student one moment, a raging tornado the next. Words were my most powerful weapons. I spoke before thoughts had a chance to be processed. My insides spun like a hamster wheel. If I wasn’t scared, I had the confidence of Super Girl.

In college I felt progressively worse as I matured and held more responsibilities. I didn’t understand my anger, confusion and almost constant anxiety. I had explosive arguments wherever I went. 

By the age of 20, I was a college graduate and in the workforce. I was very independent and successful at work, but my anxiety and confusion hit a new peak. Everything was thrilling and overbearing at the same time. The obsessiveness was in control. My stomach spun just as fast as the thoughts in my head. People were calling me crazy to my face and behind my back. I agreed with them. 

At the age of 23, I had a car accident that indirectly led me to mental health treatment. I never should have been behind the wheel of a car. I had no intention of being reckless, but I wasn’t being safe either. The car spun around a few times, flipped over and landed on its side. I simply crawled out of the car and waited for the police. 

The orthopedic doctor I saw asked why I was on valium, and handed me the business card of a psychiatrist.

I was originally treated for depression before the diagnosis of bipolar. Once the right combinations of meds were found, I felt for the first time like I had support. I’ve been in treatment with medications ever since. My illness is always with me, but I am better at maintaining my life. If not for that car accident I don’t know where I would be.  

There are people who don’t believe that I have a mental illness. A few weeks ago when I was confiding how I felt, someone said to me, “No. That didn’t happen, you never said that before, that’s not ADHD.” If I had thought to give a report of my daily life for all these years would they still question me?

If I was to “report” the events of an average day it might go like this: “I had an argument with you today in my office. Luckily I realized that you weren’t there before someone walked in and caught me. I think the fire alarm above my desk might be a camera. When I left, I thought the toaster might be on so I went back. After I was in my car I thought the light was on, so I went back. On the way home I ended up in New Bedford. I thought I didn’t lock the gate, so I went back. Home now. Did I spell-check the last document that I emailed? I have to go drive around the block because I may have I hit something.”

Even without complete acceptance (or an x-ray), I’m thankful for my doctor, medications, support group, volunteering, hobbies and the love of my family that allows me to maintain my life with mental illness.

Op-Ed: The Public’s Misunderstanding of Our Disorders

By John
Comparing the Perception of Mental Illness to Cancer

I wish I had cancer. That’s not what I mean exactly. I wouldn’t wish that horrible disease on anyone. What I wish, is that my disorder had the same respect as cancer. In 2010 I was diagnosed as being bipolar and introduced to the world of mental illness. I was also made painfully aware that I shouldn’t tell anyone and that what I had was to be kept in the shadows and not shouted from the rooftops. 

Quick—right now—what month is Breast Cancer Awareness Month? What color is the ribbon? I bet 9 out of 10 people know that it’s October and the color is pink. You know what? That is great. However, did you know May is Mental Health awareness? Only if you or someone you love has a mental illness. If there is a ribbon for mental health awareness, I have no idea what the color is. Just in case that didn’t sink in, it’s more acceptable for men to talk about women’s breast for a month than it is for anyone talk about mental illness. 

All of the hospitals I have visited have cancer “centers.” While the mental health or “Behavioral Services” area is just that, an area. These cancer centers are usually adorned with someone’s name proudly emblazoned across the building. They are proud to have donated money to such a worthy cause. You would probably have to go back 100 years to find a dead artist that would be willing to have their name associated with the mentally ill. The behavioral services are also sometimes lumped in with the same people that are detoxing. That’s right, if you are schizophrenic or bipolar you are housed with the same people that are addicted to drugs whether they have a mental illness or not. They need help too and I’m glad they are getting it, but when you go and get heart surgery are you sitting next to someone drying out? No, they would never dream of combining cardiology with the “crazy people”. 

When researching cancer, one of the big statistics that National Cancer Institute keeps track of is mortality and understandable so. Dying sucks. But, you know what else sucks? Suicide. That’s how we track the mortality rate of mental illnesses. By the way, suicide is the 3rd leading cause of the death in the US among people aged 10-24. If someone dies of cancer we mourn openly. If someone commits suicide we don’t talk about it. 

Have you ever noticed a sign in your neighborhood advertising a BBQ chicken sale to support Dave in his battle with (insert horrible disease here)? Communities rally together to support someone they might not even know. I think it’s wonderful and shows great compassion. However, I’ve never seen a banner in my neighborhood that said, “Hey, support Jeff. He suffers from severe depression and is unable to maintain a job.” “Stop being lazy and suck it up like everyone else,” would be most people’s response as they drove past my fictitious sign.

Lately, I’ve heard the mantra “Stop the Stigma,” which I fully support. However, it’s a gross misrepresentation of the problem. Pitbulls have a stigma. Used car salesmen have a stigma. What people with a mental illness have is a debilitating disease that is misunderstood to the rest of society in the same way that Greeks thought the Earth was the center of the universe. That’s not a stigma, that’s a fundamental misunderstanding of the basic facts. People, society, media and even my family don’t understand the basic facts. It’s like trying to explain what salt taste like without using the word “salty.”

Mental illness is a stigma, don’t get me wrong. I just wish there was a more accurate and severe phrase like, “Mark of shame that you can never speak of, but screams more about who you are than anything you will ever do.” You know something catchy like that. 
My point is that cancer is horrible, but it gets the attention and funding it deserves. Mental illness is also horrible, but it is hidden, misunderstood and left only the dregs of support and usually only after someone has killed himself or herself. I have been struggling for over seven years with my own disorder, often alone. Even my wife, who spends every day with me doesn’t comprehend my struggles. Mental illness is such a sad state that I fantasize about being absurdly successful just so I can talk and advocate about my illness. That’s the level of disdain mental illness carries. One has to have celebrity status to be able to withstand the social prejudice that these disorders have. Until then, I will continue to fake a smile and pray in silence for those worse off that even myself.

Avoid the Crushing Consequences of Studying Too Hard

By William Jiang, MLS 
Might There Be a Link Between Learning and Depression? 

As September and the fall semester begins, I remember the rush I had as a university student caught up in the swirl of energy of my fellow students and myself, more than twenty years ago now. A smile lights up my face as I recall, and then I think of a dark joke that my brother taught me his freshman year at MIT.  A professor stands in front of a window after leading a tour around the campus, and he asks the students, “Do you know why MIT’s colors are gray and red?” All the freshmen students shake their heads. Just then, outside of the window, everybody sees a body falling to the cement below. “That’s why.” says the professor.

MIT has a higher suicide rate than the national average, but the joke reflects an underlying truth about campus life all over the United States. According to Collegedegreesearch.net, there are about 1,100 suicides on campuses around the USA each year, and, shockingly, six percent of all undergraduates have seriously considered suicide. Why is contemplating suicide so common among university students these days? A lot of stress, abuse of drugs and alcohol, as well as underlying clinical depression and anxiety are risk factors. Even if you are a learning machine, my advice is to take time to smell those roses because too much stress will take down even an ubermensch gifted student.

The Statistics 
One in four Americans suffer from a serious mental illness during their lifetimes, most often depression or anxiety. Serious mental health issues can be triggered by the stress of university or years of workaholism. It is no coincidence that depression is soon to become the number one cause of long-term death and disability worldwide by 2020, according to the World Health Organization. 

Reading and Mental Illness
University students read a lot. Problem? Maybe. Even high-achieving readers are predisposed to bouts of melancholia, according to medical history. Before the 19th century, doctors thought that the mere act of reading books could cause mental instability. See “A Text-book on mental diseases” by Theodore H. Kellogg. Also, see Wikipedia’s article on the history of depression: “Since Aristotle, melancholia had been associated with men of learning and intellectual brilliance, a hazard of contemplation and creativity.”

According to the Census of 1890 about one percent of one percent of the population or one in ten thousand people in all of the United States had a hospitalization for depression. Today approximately one in seven people in the US suffers from clinical depression and the rate keeps going up. In 1890 few people had the opportunity to educate themselves beyond a basic level of reading, writing, and arithmetic. Today, one in four people in the U.S. is a college graduate. As rates of college graduation go up year to year, so do the figures of people becoming clinically depressed. The question becomes, “What can be done to stay healthy?”

Protection: Omega-3 Fish Oil and the Prevention of Clinical Depression
I worked as a medical library chief at the leading psychiatric hospital in the United States, New York State Psychiatric Institute/Columbia Psychiatry, so I have a bad habit of quoting Medline to prove points. From the electronic publication Oxidative Medicine and Cellular Longevity, March 18, 2014, there is a journal article titled “Omega-3 fatty acids and depression: scientific evidence and biological mechanisms” wherein the abstract states that “..several epidemiological studies reported a significant inverse correlation between intake of oily fish and depression or bipolar disorders.” Free full text of the article is available to anyone who wishes to explore the article in more depth at pubmed.gov.

Back when I was an undergraduate, we did not know as much as we do today about the science behind a healthy brain and body, so we can do much more today than before to keep our minds and bodies healthy. Paradoxically, college students are less fit and more prone to suicide than ever before. According to Collegedegreesearch.net suicide rates for our youth are three times what they were back in the 1950’s, and diabetes rates are going through the roof among the Internet Generation.

I gave only one tip in this article about how to keep your brain healthy. For more great tips and techniques on how to keep your brain healthy and running in top form, as well as improving your university performance, I invite you to check out my book on Amazon: “Guide to Natural Mental Health: Anxiety, Bipolar, Depression, Schizophrenia, and Digital Addiction: Nutrition, and Complementary Therapies.” 

If you feel suicidal please call the National Suicide Prevention Lifeline at 1-800-273-8255. 

How I Conquered My Fear of Cancer and Improved My Mental Health

By Tiberius Bauer
Positive Thinking, Nutrition and Exercise Very Important

My father said, “Never forget. When you pray, pray like it would be your last day, and when you finish, live like you would live forever.”  

I was born in Romania in 1951 and came with my family to the United States in 1965.

I was sexually molested when 11-½ years-old. My nickname was “Fatso.” 

My brother committed suicide in 1976. Both my parents died in the 1980s. My father from diabetes and colon cancer. My mother had a stroke.

My wife got diabetes. We went to the Mayo Clinic and a doctor in Texas. Insurance didn’t pay. I almost went broke. She had an operation on her legs. One was amputated. She died in 2002. I felt partially responsible for my wife’s situation. I focused on her physical health, but never gave her emotional support. 

I didn’t take care of my mental health. I thought about what happened to me when I was 11-½. I wanted to kill myself and tried twice. A psychiatrist said I was bipolar. He gave me medication. I stayed in a hospital and went to a clinic.

Other family members got cancer. Six of my friends died from it. Nine friends committed suicide. I had high blood pressure and kidney stones, poor eyesight and hearing, bad leg, arm, and shoulder, obesity and diabetes. 

I was ready to die. I had the pills and I locked the door. My roommate called my cousin in New Jersey. I was just about to take the pills when my cousin called. He invited me out for the weekend and said he had a surprise.  

The surprise was a Samsung 10-inch tablet. It was the best thing that ever happened to me. 

Now I could search the Internet for answers to my fear of cancer, how to prevent and treat it. I found good advice from Burton Goldberg, doctors Bernardo Majalca, Stanley Bass, Ian Jacklin, and many others.

This is my conclusion: Cancer is not a death sentence. It’s a major inconvenience.

#1 Cancer thrives on anger, depression, anxiety, and bad thinking. Think positively. Try cognitive behavior therapy and/or peer support groups.

#2 Sequential eating means eating the right foods in the right order. Mostly fruits, vegetables, beans, nuts, and grains. Eat all kinds of food in sequential order. Dr. Stanley Bass says, “Start with the food that has the highest water content, and work up to the food that has the highest fat content. Consume water or juices first, then fruits, vegetables, grains, beans, nuts and seeds and meats. This means you shouldn't drink liquids during or right after a meal, and fruit shouldn't be used as a dessert.”

#3 Combine foods rich in amino acids to increase nutritional value. I repeat, combine foods. Examples of foods that are rich in amino acids include eggs, animal protein, legumes, grains, nuts and seeds. Quinoa is one of the few plant sources that contains a full balance of amino acids, according to About.com (from reference.com).  

#4 Exercise. Aerobic exercise and/or weight lifting are good for mental as well as physical health. 

Now you have information I wish I had when my wife was sick. Maybe it could have saved her life. Consult a physician and make your choice. 

My fear of cancer isn’t gone. Heredity is the X-factor. I am not going to worry about it. I decided I do not want to have fear anymore. 

If I don’t take care of my diabetes, this is what’s going to happen: bad circulation, blindness, amputated legs. First, cane. Second, walker. Third, wheelchair. Then nursing home. Finally, death. I want to live a normal life.

If I save one life with my story I will be happy.

Note: To buy the complete version of his story, contact author at HowIConqueredMyFearofCancer@gmail.com. It costs $19.99, plus tax and shipping.

Lauren Slater Investigates Psychology’s Most Famous Experiments

By Carl Blumenthal

Like all of us, Lauren Slater is a bundle of contradictions: patient and psychologist. Multiply diagnosed but responsive to medication. Once anorexic, now obese. Straight, married with kids and a lesbian lover. Fiction and non-fiction writer. Philosopher and funny girl. 

In Welcome to My Country: A Therapist’s Memoir of Madness (1996), Prozac Diary (1998), Lying: A Metaphorical Memoir (2000) and Opening Skinner’s Box: Great Psychological Experiments of the Twentieth Century (2004), she upsets our expectations of how peers and professionals are supposed to behave.  

The first two books won acclaim for a psychologist who confessed her psychiatric history in vivid prose. As if such honesty were too good to be true, the next two volumes were criticized for playing loose with the truth. Since then Slater’s star has faded as she’s written about her pregnancy, children, fairy tales, and animals.          
I find Opening Skinner’s Box her most fascinating work. She believes psychology is more kindness than diagnoses and treatments. More art (intuition) than science (reason). This insight isn’t new, but as a creative writer before, during, and after her stint as a clinical psychologist, Slater’s imagination is her best tool.   

Of the ten researchers on Slater’s best-hits list, consumers of mental health care will probably dislike eight. Behaviorist B.F. Skinner and his compliant rats are the worst example. Of lesser ill repute are Stanley Milgram who tricked human subjects into obeying his commands and Harry Harlow who abused monkeys to prove maternal attachment. 

Other investigators found bystanders don’t help people in danger, we rationalize our behavior to fit our beliefs, addiction in rats is a matter of choice not genes, people’s memories of abuse can be invented, learning in sea slugs is neurological, and brain surgery on the mentally ill relieves distress. 

The main exception to these anti-humanistic rules: volunteers faked hearing voices and were hospitalized against their wills, undermining the validity of psychiatric diagnosis. 

Dr. Slater admires these scientists’ ingenuity and how their experiments changed the course of psychology, although some practices are now considered outdated or harmful. Her subjects are an obsessive-compulsive bunch. How else could they have dedicated their careers to proving controversial ideas? If they over-promoted themselves and their theories, this makes them intriguing characters in what reads like a detective novel. 

Slater adds to the excitement by questioning our “prejudices.” For examples, she decides Skinner wasn’t really authoritarian and psychosurgery is now sophisticated enough to be beneficial. In the dire situations concocted for many of the experiments, she imagines herself failing such tests of moral courage.  

Stating “I’m partial to jokesters, adventure, to people in pain,” she buys gas masks for her family after 9/11, goes to psych hospitals with fake symptoms, and takes opioids to see whether she’ll become addicted. Her husband’s objections to what he thinks are ridiculous, even dangerous ideas, spurs her on.   

Whether trying to be an honest reporter or just expressing her natural doubts, Slater generally analyzes the pros and cons of each hypothesis without choosing sides. Rather than pulling the proverbial rabbit out of the hat of uncertainty, she invites readers to examine the tricks of the experimental trade—mainly overgeneralizing from small human samples and animal models.   

As in Welcome to My Country, she can be profound. What she says about a patient with schizophrenia represents her philosophy of life: “Not being is built into us as certainly as is being. Every heartbeat has its opposite, a snatching away of sound, an evaporation of blood. Behind every presence lurks an absence. Loss, loss, the animals cry.”

Who can prove or disprove in 256 pages research that consumed lifetimes? An intellectual explorer, Slater has a knack for filling in missing evidence with descriptions of the landscape, outside and in her mind. She orients us to the possibility we’re going in circles because “all of us are artists where images have only the vaguest relationship to reality.” 

Slater says of Elizabeth Loftus, who challenged the recall of child abuse witnesses, “In the end [she] is just like the rest of us, only amplified, a blend of intelligence and blindness, with many soft spots.”

Readers will have to decide whether these soft spots are weakness or the milk of kindness. Though her book was published 12 years ago, Lauren Slater’s misgivings and love offerings are still relevant today.