Self-Direction in Medicaid for Well-being and Empowerment

Self-Direction in Medicaid for Well-being and Empowerment
By Briana Gilmore, Public Policy and Advocacy Director, NYAPRS
Self-direction is a strategy in organizing and delivering Medicaid-funded services and community supports that can dramatically enhance opportunities for people living with disabilities. The process transfers some of the funds typically afforded through Medicaid payments directly to the consumer, who develops a plan to utilize the money for services and supports for increased engagement and well-being. Hundreds of thousands of people experiencing developmental disabilities already utilize the approach, and many states have implemented or are seeking pilots to bridge the method to the behavioral health recovery community.
In New York, the Office of Mental Health (OMH) selected self-direction as a new service to implement through a Health and Recovery Plan (HARP) for Medicaid recipients with enhanced BH (behavioral health) needs. Implementing the program thoughtfully will take some careful planning; therefore the program will be piloted for a few years before being brought to scale statewide as a benefit for eligible recipients.
Any self-direction model must take into consideration the particular recovery needs of the community for whom it’s modeled. For people with physical needs, funds are often self-directed to health aides, house modifications, or other consistent supports. A model to support the behavioral health needs of a community must take into account social needs that span employment, education, community inclusion, well-being, and traditional rehab supports. New York is looking at an approach that would allow recipients to buy services like habilitation (services that help a person learn, keep, or improve skills and functional abilities that they may not be developing normally) and supported employment, but also direct funds to community wellness supports like gym memberships and yoga classes, college classes and bus passes.
The implications of self-direction are vast; it is the most flexible way for consumers to take ownership over their recovery and invest in chosen supports. The success of a self-directed recovery plan is largely dependent on the relationship between each recipient and a support broker, who is a chosen navigator that helps to maximize an individual budget. A recovery plan is based on current capacities and supports, and incorporates wellness goals for overall health. A recipient uses the plan as a tool to guide their spending. Purchases of traditional services and community supports are now typically made with smart debit cards that can track allowable services and be refilled directly by the payer.
There are many considerations that go into creating a self-directed design that benefits people with BH needs. The plan must take into account accessibility and enrollment processes, ensure culturally competent approaches, and allow for creative community-based solutions for enhanced well-being. The design must also plan for a relationship between a recipient-driven recovery plan, and a treatment plan that is supported by a Medicaid Managed Care Organization. Support brokers—who in most models are peer specialists or recovery-trained life coaches—should be supported by an infrastructure that can foster innovation and adaptiveness within the model. And ultimately, the financial process has to offer an efficient transfer of funds from the state Medicaid program.
I’ve been involved in a planning process with NYAPRS and the Columbia Center for Practice Innovations to help OMH develop a draft model for BH self-direction. The team has worked for eight months to review research, meet with experts in the field from around the country, and engage Medicaid recipients, DOHMH (dept. health mental hygiene), and other stakeholders to develop a strategy for implementation. The process will continue in the coming months as OMH explores the best framework and negotiates the process with other state agencies, Managed Care Organizations, and recipients.
NYAPRS (New York Association for Psych Rehab Services) has been advocating for a self-directed model in New York for nearly a decade. It’s exciting to know that the model could be offered to tens of thousands of Medicaid recipients with BH needs in the coming years. The state agencies, particularly through the Medicaid Redesign process, recognize that innovative approaches like self-direction can contribute to long-term savings and system benefits. These gains will be as a result of quality of life improvements like reduced hospitalizations and increased community engagement, as well as better overall satisfaction with the Medicaid program. A New York State pilot will include a strong research component to look at how recipients of different ages, backgrounds, and with different geographic living settings use and benefit from self-direction.
Barriers do remain, particularly in the appropriate financing of the approach. It’s also essential that appropriate protections be in place for both consumers and insurance companies before the design is implemented as a standard benefit. The design may provide a truly fundamental shift in Medicaid programming and consumer rights, if stakeholders on both sides continue to work together to actively improve the design through emerging best practices.
Look for opportunities in your area to participate in a self-direction pilot in 2015, as well as information about how you can get involved in the state’s planning process.

Resilient Not Incompetent

Resilient Not Incompetent
By Pamela
Finally Knowing the Reason for My Distress
I think I always knew that I had a problem. When I was young I used to be afraid of everything. I stuck close to my parents and stayed home with my youngest brother Andrew who had cerebral palsy. While my other brother and sister went out and made friends, I was at home.
I hated school. I was bullied and didn't have friends until my senior year. I was a terrible student. I found things very confusing and took a long time to grasp concepts. I would stare off into space and zone out, missing entire portions of my class. I thought I had a learning disability or that something was wrong with my brain, but I just couldn't figure it out. I was afraid to talk on the telephone because of the people on the other end and what they thought about me. What they were saying about me were things that scared me.
It doesn't happen often, but sometimes while having a conversation with someone, I will be in mid-sentence and then I begin what I call “word salad” where I jumble up a bunch of nonsensical words that mean nothing. It’s embarrassing. I can hear myself saying it, but pretend I didn't do it.
I've attempted to go to school to change my career twelve different times, each time leaving for a different reason. My instructor was sabotaging me, I had chosen the wrong field to study, I wasn't smart enough, I didn't feel comfortable in my classes because the students were talking about me under their breath.
I've changed jobs about as many times as school. Left and came back four times at one job. At my last job prior to treatment, I worked with a small group of people who were as frightened of me as I was of them. I was manic and tried really hard to do a good job. I worked and spoke quickly, again speaking word salad, and could not understand why they weren't pleased with my hard work. One day I just fell apart, hallucinating and seeing blue dots all over the floor, ceiling and walls. I thought everyone at work was responsible. I left that job the same day and never returned. After talking to my priest, a criminal psychologist, about my experience, he gave me the name of a psychiatrist. This wasn't the first psychiatrist that I had been to, but the first to name my condition: schizoaffective disorder.
I began the challenge of finding the right medication to help my depression, mania, delusions, paranoia, hallucinations and anxiety. While waiting for relief, I became suicidal. I was at work and had the good sense to tell my supervisor, who took me to the emergency room where I was transferred to a hospital for behavioral health and substance abuse. I was there ten days while they played with my medication. For one week after being released, I had panic attacks every day, causing me to have fainting spells. I would pass out and end up in the emergency room. I thought I was going to get fired. I requested a change in shift from first to second shift, so I would not have to work with too many people.
After five years and two more psychiatrists, I finally have a mixture of medications that work for me. I read all the time about people wanting to get off their meds and take care of their mental illness without them, but for me medication is a necessity. I've needed medication for a long time, and without it I am not lucid.
Right now I'm taking my meds as I should. I know that down the line I'll probably have another break. I think it's inevitable. My symptoms seem to be cyclic and I don't know that I'm in trouble until I’m in the midst of it, when someone tells me something is wrong. I am grateful to be finally aware of my diagnosis. It is a relief to know that it was not my fault to have failed at the many things I've tried so hard to accomplish. For years I believed I was stupid and incompetent, when what I really am is resilient.

Editor-At-Large/As I See It: The Dangers of Lithium

Editor-At-Large/As I See It: The Dangers of Lithium

A Column by NYC Voices' Business Manager Marvin Spieler

Exercise Your Consumer's Right to Choose

After being on the medication Lithium Carbonate (Lithium) for twenty-one years, I became toxic. I knew potentially I could become toxic, but I was playing the odds. However, I lost in the end. Now I am on dialysis as a result, as Lithium ruined my kidneys.

The kidneys: we all have two of them, they filter our body’s blood to keep it clean. The kidneys excrete the waste products through the urine. Now as a result, I am with two kidneys that are almost useless. Dialysis acts as my artificial kidneys. Without dialysis, I would die. That’s the bottom line. Go on dialysis or die.

Here’s the problem that I now have as a result. I must go to a dialysis center three times a week. I spend approximately five hours each day there. Actually, three hours on the dialysis machine, and usually about two hours in transportation time to and from the center.

The result is that I waste three days of what used to be productive time doing other things. I used to be a mental health advocate. However, I had to drop my advocacy work. I can no longer attend meetings, go to conferences, or go on trips to Albany with NYAPRS members to keep legislators from cutting the mental health budget.

At first I became depressed over my new reality, but that has passed. I am used to my new lifestyle. I finally accepted the fact that I had to drop my mental health advocacy work. However, it is a great loss.

Why am I telling you all this? GET OFF LITHIUM NOW IF YOU TAKE THIS DRUG!! Fortunately for you, now there are substitutes like Depokote or Tegrotal that work just as well for most mental health consumers. Only in rare cases, a few consumers have no choice but to stay on Lithium. I tried Depokote and Tegrotal. Tegrotal is now my drug of choice. I am doing as well on Tegrotol as I was on Lithium. Like Lithium, I need periodic blood tests to see that the level is in balance, so that in itself isn’t new for me.

Again my advice to you is this. Seriously, have a discussion with your psychiatrist. See what he says. Listen to his point of view. But in the end you have “the right” to determine what meds you take and don’t take. That is a right you have. Use your judgment. Mental illness doesn’t kill your right to think or choose. Use your brain to control your health.

When I went on Lithium there wasn’t much else to control my moods. It worked. I had twenty-one glorious years of continuous freedom from psych wards on Lithium. I built a life for myself. I made long-term friends, met a wonderful woman and married her. We decided on no children as we both had mental illness and didn’t want to potentially pass it onto our children. That is my only regret. Children would possibly have been a blessing, but that was our choice back then. Medications were crude and usually not very effective. We didn’t and couldn’t anticipate a modern second generation on psychiatric meds. So my advice is get married and have kids if you desire to. However, be ready for the turmoil your kid or children may have initially with mental illness. Mental illness is like no other illness I know of.

By the way, I am proud to say I am hospital-free for over thirty years now, a record I am proud of. This is one of my major accomplishments in life. To be free of the goons in psych hospitals is a real joy. To no longer worry about a hospitalization as long as I take my meds daily, I do thank medical research and modern drug production.

How Long Have You Been On Meds?

To be blunt, the drug companies in this country have pushed their products to the point of being the totally acceptable panacea to help the mentally ill. It is my understanding that in Europe, medications are used as a last resort.

Also, drug company representatives, meaning salesmen and psychiatrists who represent drug companies, have brain-washed most of our American psychiatrists. We consumers, as a result, have been practically forced to take meds for life. It is my assumption that after “x” number of years on medication, it is almost impossible to get off meds on our own.

Most psychiatrists swear never to take you off meds. That is what they are probably taught. Otherwise, why is it so hard to find a psychiatrist who will help get you off? In the end, we ourselves begin to believe the common line of thought about staying on them.

After a lifetime of medication, my concentration and memory are shot. As a result, I haven’t been able to read a book in years. I guess I must be thankful not to be hospitalized for years on end. Thank you, drug industry. HAH!!

Saved By a Cat by Shannon

Saved By a Cat

By Shannon

How My Pet Kept Me From Committing Suicide

In 1982, I was diagnosed as having a “problem.” I was twelve. At that time there were no real medications, or much therapy, for juveniles. I suffered with periodic depression until I reached college and was able to get some therapy at the campus’s mental health center. Right after college, I chose to get married—instead of attending Graduate School for a master’s degree in counseling—for the mere reason that someone asked me to. I had such low self esteem that I figured I might not get another chance. BIG mistake. Though the man was patient with my issues, he never fully understood and simply flew quietly under the radar when I was at my worst.

In my thirties I began to experience extreme mood swings. I would go from frustration to full outrage in twenty seconds. I would throw things, scream, and once I tried to stab my husband in the throat with a screwdriver during the process of hanging a ceiling fan.

When I visited a psychiatrist and described the instances, I was prescribed my first mood stabilizer. Later came an anti-depressant before an anti-anxiety drug was added to the cocktail. I began intensive therapy but was getting nowhere with my bouts of depression. I began to take the anger and sadness out on myself.

I would have irrational thoughts, such that if I cut myself I could bleed out the pain, as if I were accidentally injured. Though for most of my life I was unaware of the name for this illness, I had been suffering from Dermatillomania, a disorder where someone can't stop picking at their skin. I had always been a “picker,” as it was a self-soothing mechanism I had developed early in life. I hated the results, but was comfortable enough to do so. With all of these things combined, I was finally diagnosed with borderline personality disorder, which put everything else under that umbrella into perspective, and subsequently changed both my medication and therapy protocol.

When I next became ill I was prescribed high doses of Prednisone. BIG MISTAKE. It resulted in an obsession with death and eventually a suicide plan. I was miserable in my marriage, at work, and had recently lost a very special pet. I was simply in more pain than I could ever imagine. More than anything, I wanted to end the pain and kill the painful parts of my being. I had no clarity that efforts to cease that would end all my future. I just did not see that they were all intertwined. I had a complete nervous breakdown, went on a manic spree, and then planned my suicide.

The morning I was to complete my act, one of my cats intervened. As I began to take the pills I had been stockpiling after doctor hopping for weeks, she literally swatted at my hand. SMART CAT! It shook me into a reality that made me realize how many joys I would be missing. I called my therapist and my husband and was admitted to an acute mental health care facility. I was only released after plans had been made to transfer me to another facility in another state that provided DBT therapy, which was the protocol for BPD (borderline personality disorder) patients.

After four months at the facility, the staff and I felt I was ready to resume life. My husband and I decided to divorce in that time. I had met another wonderful man while in treatment. After several months I moved to the state where we had met and we began a new life together.

I was doing really well for one of the longest periods ever. Meds were right, therapy was fitting, and things were going smoothly. During a five-day vacation period from my job, I somehow developed agoraphobia. I literally feared going outside, avoided sunlight and kept my curtains closed. Thus began another hospitalization, this time for about two weeks. My meds were again readjusted, and I was released. Since then, that boyfriend and I eventually broke up, and I moved back to my hometown.

I’m currently suffering again from deep depression and anxiety. Yet, now I have no health insurance and have to rely on state funded care, which is minimal at best. I am able to hold a part time job and socialize with two of my lifelong friends. I have a new pet that brings a level of peace and responsibility to my life, which helps to keep me together. I only pray that simply surviving will continue.

Some Hidden Links to Mental Illness Uncovered by Scott

Some Hidden Links to Mental Illness Uncovered

By Scott

I turned 37 years on January 7^th, and I have a heartfelt story to share. In January 2007 I was diagnosed with schizoaffective disorder, a mild form of schizophrenia, but when I opened up more to my therapist. She agreed with me that I was slightly misdiagnosed and that what I have is schizophrenia. I have lived with it ever since.
From 1993 to the year 2000 I had lived with undiagnosed mercury poisoning which stemmed from having had 16 mercury fillings by 2000 at the age of 24. My dentist helped diagnose me and I had him replace all 16 fillings (paying $900 out of pocket for work that was not covered by my insurance) and he put in white composite fillings, I underwent detox in 2001, and after three months of detox my symptoms of depression, stuttering, and panic attacks were gone for good. It was miraculous, and I feel my prayers to God led me to my diagnosis and recovery.
Six years later I faced so much stress that my brain broke, and I have had schizophrenia ever since. My regret was that I did not seek help sooner because I went eleven months in 2006 with full-blown schizophrenia and I suffered. I learned that in 2010 through a blood test that I had Vitamin D deficiency, and according to the Vitamin D Council's website there is now an accepted clear link between Vitamin D deficiency and mental illness. Mercury fillings depleted my Vitamin D and I will have mental illness for the rest of my life as a result, which is kept in check with a miraculous medication, the generic brand of Risperdal called Risperidone, one pill daily. I am trying to get the word out that the American Dental Association is a major lobbyist in Washington, DC, and because of that fact it’s hard to get many sponsors for the bill to ban mercury from use in dentistry.
After 2000 I became a mercury dental advocate trying to get mercury fillings banned nationwide through law, and you can go to this amazing website: www.toxicteeth.org which is run by the main non-profit in our country who has worked with legislators to get mercury fillings banned, Consumer's for Dental Choice.

For further information, you can contact Scott via scttrss@juno.com.

Medicaid Managed Care: Recovery Moves to the Mainstream

Medicaid Managed Care: Recovery Moves to the Mainstream

By Briana Gilmore, Director of Public Policy and Advocacy, New York Association of Psychiatric Rehabilitation Services (NYAPRS)

Learn More About the Trends That Will Affect You

Big changes are coming soon to New York’s Medicaid system. Services are being overhauled to emphasize quality and outcomes, and new services are being added to ensure that Medicaid is paying for the most cost-effective and valued treatment. Why is this good news? These changes will be beneficial to all Medicaid consumers who use behavioral health (BH) services. In fact, New York will implement changes in 2015 that emphasize recovery-oriented BH services in unprecedented ways.

This change started in 2011 when Governor Cuomo instituted the Medicaid Redesign Team, a planning system that looked at outcomes of the Medicaid system and made targeted changes. The goal was to build off reforms central to the Affordable Care Act, with the mission of reducing overall cost while improving outcomes and quality care. Policy makers quickly realized that achieving this would be particularly challenging for the BH system.

New York is transitioning the BH system because recovery-focused services not only improve quality and outcomes, but also save money. This plan also raises the bar for providers, many of whom have long been funded based on how often people come to programs rather than demonstrated improvements in people’s lives. In order to achieve this transition, the plan targets social determinants of well-being such as housing, employment, education, and family connections.

DOH, OMH, and OASAS have decided to accomplish this by moving to a system of managed care that will be expected to improve the coordination and impact of care.

Managed care isn’t new, and many who are Medicaid eligible already have physical health and pharmacy services paid for by a Managed Care Organization (MCO). In 2015, every person in New York State who is eligible for Medicaid will also have their mental health and addiction services coordinated and paid for by an MCO.

If you are already enrolled in an MCO, you will receive all of your benefits from the same plan. If you’re not enrolled, you will have to choose an MCO. If you’re not sure about which plan to choose or if you want to switch, you can access an enrollment broker to help you do so.

Medicaid recipients who have used a lot of mental health and addiction in the past will be enrolled in a Health and Recovery Plan (HARP) that will offer and coordinate a greater amount of those services.

Thanks to advocacy from NYAPRS (New York Association of Psychiatric Rehabilitation Services) and other advocacy groups, HARPs are required to offer services that have never been Medicaid funded, including peer services, crisis respite, supported employment and education, family supports, non-medical transportation, and self-directed care.

Some of these services, like crisis respite, will be available as needed. But others will be offered based on goals you express during treatment planning with a care manager, such as transitional employment. This will be a major change for many people; instead of just being offered service options, people in HARPs will be asked what their recovery goals are and what supports they need to get there. It will take time to build a system that understands how to do this, but it will also take time before all community members are able to articulate what their goals and preferences are.

Ideally, that is what care management is all about. Health Homes are established throughout the state to provide care management that excels at helping people access services they really want and need, including community supports like housing and wellness activities. Health Homes are just networks of providers organized by a central agency; they aren’t a place, but have care managers that provide outreach in community settings.

Health Homes are operating with mixed success. Their capabilities depend on the strength of their provider network and ability of staff to truly understand the needs of our community, including cultural norms and preferences. Care Management will be a big part of the way MCOs understand and organize services in the future, particularly through HARPs. MCOs will have to work with Health Homes to ensure each recipient receives the attention that helps them achieve the best life possible in the community.

This historic shift in the way Medicaid is delivered will mean dramatic improvements in the way the community accesses services that truly help people recover. But it won’t happen perfectly all at once, and recipients may have to press for better attention from care managers, more appropriate service access, or demand community-based living and service options. NYAPRS and Medicaid Matters New York, along with other associations, achieved the inclusion of an ombuds program in Medicaid Managed Care; an ombuds is an office that can objectively help resolve complaints and help consumers navigate problems.

Importantly, this shift is just one of many moving toward a more coordinated system. People who need nursing home or long-term care services will also experience changes in services coordination, and eventually everyone in New York State who has Medicare coverage will elect an MCO. Stay updated through community forums for information about how benefits you receive are improving and what you can do to advocate for what you and your peers need.

To Growl or Not to Growl: That is the Question by Matt

To Growl or Not to Growl: That is the Question

By Matt

My Miracle with Zoloft

My problems began, believe it or not, when I was two and a half years old. This I report on good faith from the voice and words of my father. I trust him on this one, and I trust my earliest memories, as well, starting sometime around age four, which are of a child who was always, always unhappy. This “condition,” if you will, continued, or rather persisted, until almost exactly three and a half years ago (if my memory serves me right, and these days, often it does). I am now forty-five, and I’ve been a “different person” since that time. I’m sure at least some of you have guessed the reason: medication, specifically, Zoloft.

I have taken many different medications over the years, including virtually the entire range of SSRIs (selective serotonergic reuptake inhibitors), but this one, for some perhaps strange reason, did a whole lot “more” for me than any of the others. To wax poetic, Zoloft kicked me out of bed. It punched me into alertness and awareness, and it got me going—swinging and ringing and dinging like a Liberty Bell.

Until the Zoloft, I had been drinking, smoking crack and about three-packs-a-day of rolling-tobacco cigarettes, and I weighed some 50 pounds more than I do now. I was in a perpetually agonizing mental condition that defies words. (As a writer, I should try to put it into words, but I fear the length of my possible description.) Suffice it to say, then, crack, and before that cocaine, were the only things that really made me feel alive, i.e., normal. Ritalin “worked,” but was also way addictive for me. When under the influence of crack or cocaine, my symptoms would disappear, and would stay gone for up to three days after the getting high, although usually this respite lasted no longer than two days.

I had been slugging to AA meetings for fifteen years prior to the Zoloft, but to no avail. I had never, as they say in AA, “put any time together.” I’d go a week max, and then “relapse.” (I put this term in quotes because I’ve become highly skeptical of the AA lexicon, or vocabulary. And that’s not all. Believe me. But we mustn’t get angry.) So, after fifteen years of trying to stay off the stuff (booze, cocaine, then crack and cigarettes), I had this psychiatrist at the substance abuse clinic I was attending who tried the generic Zoloft out on me. That’s what Medicaid likes to cover, generics. Suffice it to say that for all intents and purposes, on that very day I crawled out from my chronic, endless nightmare-of-a-shell. Included in this “shell-existence” were shame—perpetual shame; guilt, perpetual as well; envy; fear (shitting-the-pants kind); hatred, loathing and contempt for everyone who wasn’t blood; a gnawing, rotting sensation of all-enveloping inadequacy and inferiority; consequently a jealous, embittered hatred for everyone who made me feel small, which was—and I say this literally per all my age-peers—everyone. Everyone made me feel small. Everyone. Every one.

Am I angry? You bet I am. But at what, one might ask?

I would say the biggest main targets of my anger are those arguably institutionalized belief-systems in the so-called “recovery community” that presume to tell me that I should be grateful, and that I’m wrong if I’m not. Those “in recovery” will deny saying this, but there’s no point arguing with them—much as it’s almost impossibly difficult to argue with any fanatic, or religious fundamentalist of any stripe. Again, the people I’m referring to will deny they bear any similarity to such an ideological “type.”

So, in a sense, I’ve been at war since the Zoloft-induced change. I’ve been at war over two things: 1) As part of an effort to make up for forty years “lost” to virtual functional incapacity, and 2) over those who had and have the gall to tell me how, “spiritually” speaking, I should view such a life-altering loss (with gratitude, etc.). Their merely seemingly benign and innocuous rhetoric, if I’m not careful, enrages me.

For fifteen years I attended meetings, really never agreed with it (AA) at all, but I had, literally, no other free community that even pretended to care enough to offer support. That’s how badly off I was. I stunk. I couldn’t afford toilet paper. I was easing my bowels onto the street during crack-runs to the housing projects, and I looked like the proverbial “bum.” I was knocking at hell’s door (hats off to Dylan).

However, I’m much better now. Thankfully. There. I’ve said it. Gratitude.

Faith That Began as Small as a Mustard Seed by Luanne

Faith That Began as Small as a Mustard Seed

By Luanne

How Nursing and My Spiritual Strength Helped Save My Life and Others

My name is Luanne. I am a 52-year-old from Lexington, South Carolina. I was first diagnosed with mental illness in 1996. When I look back now on my life, I believe that my mental illness began in high school and got worse during my first marriage. I was emotionally and physically abused, which resulted in a very nasty divorce and custody battle over my two children. I was diagnosed with bipolar, anxiety, depression and dependent personality disorder. I believe that my mental health diagnosis is due to genetic factors as well as trauma. I believe that my mother had bipolar but was never officially diagnosed. I did inherit an alpha protein deficiency, which has been shown to cause bipolar and epilepsy (I have both).

In high school, I suffered from extreme depression because of the dysfunction I was living in. Even though I grew up in a dysfunctional family, I still must give credit to my mom, who took me and my sister to church at a young age. I was introduced to Jesus, and had the seed of faith planted at an early age. It was my faith that got me through the darkest times of my life. In high school, I put all my time and energy into my studies and the marching band. I preferred to stay at school and away from my dysfunctional family. I knew from a young age that I wanted to be a nurse. My dream was to go to third-world countries on medical missions, but I soon learned that my mission would be at home. I found some old nursing magazines in the garage of my neighbor’s house, who had moved. Reading them reinforced my dream to become a nurse. In 1980, I enrolled in a local technical college and began my studies to become a licensed practical nurse. I then got a two-year degree and continued on to get a four-year degree to become a registered nurse. I found my purpose in life as a nurse, and I had dreams to save the world. My nursing career lasted over 31 years. I saved many lives and went on to become RN of the year for the med-surg department at a local hospital and was also included in Who Who’s in Nursing several times. I gained confidence in nursing with my educational degrees and the initials behind my name. One day I lost it all and found myself without any self-worth. I had to learn the hard way that my self-worth comes from God.

In 1996, I had my first admission to the psychiatric hospital. I had three admissions; more voluntary admissions because of suicidal thoughts. The first trip to the hospital in 1996 was by the police when my husband tried to cover up his emotional and physical abuse by claiming I needed psychiatric help. Even though my psychiatrist said he had no reason to commit me, I stayed at the hospital for a week just to get away from my husband. Shortly after the first admission, my husband and I separated and I filed for divorce. My husband won the first custody battle and the home which I had bought. He simply won because he had a better attorney than I did. The next year without my kids was the worst year of life. My days were filled with anxiety and panic attacks over losing my kids. I also lost the job that I had simply because I was honest and told the director of nursing that I had bipolar. It was my first taste of discrimination and stigma related to having a mental illness. My ex-husband married again and physically abused his second wife. I remember coming home and turning the whole mess over to God. When I did, with my new attorney’s help, I got my kids back. I went on to experience stigma and discrimination from people who seemed to have the mentality that those with a mental illness were second class citizens.

In 2007, I went back to school and earned my master’s degree in mental health counseling. I was determined to offer hope to those with a mental illness. I also became a peer support specialist and a South Carolina Share Mentor. At this time, I am awaiting and battling the broken system of social security disability. Although I am not currently employed, I still believe that God has a purpose for my life, despite my mental illness.

Having a mental illness has brought challenges in relationships, occupations, and other areas that most people do not have to face. Despite these challenges, I have become a better person and have learned many things on my journey through life. Most of all, my faith has increased.

A Little Night Music Please by Jeff Gifford

A Little Night Music Please

By Jeff Gifford

My Life Comes Full Circle in a Psych Ward

Caught a little depression with some anxiety on the side, is what I thought when I got diagnosed. It can’t be too bad. They make medicine for that. Yes, my grandmother had horror stories of ECT treatments, crying bouts, and long hospital stays. Sometimes getting out of bed was a struggle with her depression, she claimed. I always thought of my grandmother as a true drama queen.

My physical health took a nose dive in my late 40’s. I was diagnosed with a form of liver disease. I missed a lot of work due to numerous hospitalizations. When I was 50, I was told I no longer had any sick time left, and I would lose my job.

I had worked twenty-five years as a librarian. I earned my bachelor’s degree in biology and my master’s degree in library science. It was all I knew. It was my whole life. Now I would need to face foreclosure, move in with my father, and even go bankrupt.

These are days of uncertainty, and uncertainty is not good for people with major depressive disorder. It did not take long for it to begin its ugly course. Countless days were spent on the couch unable to move. The sound of the television annoyed me. I craved silence while I remained paralyzed. “Did I bathe?” I wondered. I couldn’t remember the last time I bathed.

I had turned into a lifeless vegetable, and had it not been for some good friends and family, I probably would have starved myself to death. My energy was depleted.

The feelings started to come back. It was like every neuron woke up and fired at one time. This was the worst part. I felt everything. Everything I had been repressing, the fear, the anger, my job, my life, everything—went into high gear.

I had never suffered agoraphobia before, but it was starting to settle in. I just did not want to leave the couch. I did not want to go anywhere, or even see anyone. Feelings just raced through my head, most of all fear. I craved the former numbness. It was safer there. This was eating at me, bit by bit, hitting me in heavy waves.

I do not remember the entire ride to the hospital. I do remember the police and the ambulance driver arousing me. My father said he called. The police found the empty bottle of pills. The next thing I remember was being escorted into a room where I was processed.

Processing occurs to match the correct group of patients together for effective therapy. I am told I will go to the fifth floor in the morning when there is an opening. The social worker assures me this is good news and not to be frightened.

That night was like no other I can recall, or care to repeat. It was a night of howls and moans and screeches that slowly waned past the midnight hour. Eventually, all that would be left was the laughing, street talk of the hospital workers.

I stare at the wall long enough to begin hearing the howls and moans growing in volume again. Soon it will be breakfast time. I am escorted to the dining area. I am touched to see a mentally disabled man in a wheel chair being taken care of by some residents. They make sure he gets his nourishment. I do not know his name. He is unable to talk. He needs special care. His clothes and hair are dirty.

Visiting hours are announced on the loudspeaker. Typically this is the time when hospital patients receive guests or talk to members of their clergy. Not here. Visiting hours go unnoticed in the television room or talking on a communal telephone. Credibility and cognition are wrongly assumed lost by those on the outside of these walls.

I am told to get my belongings, because I am going to the fifth floor. This is the area of the hospital designated for high-functioning mentally ill patients. I can even shave, provided I have a hospital employee onlooker. I still cannot wear a belt, however. Not until I have gained a certain degree of trust. That would take more time.

Days are filled with group sessions and games. Yes, believe it or not, “Pictionary” and “Jeopardy” are very therapeutic for this soiree of madness. It teaches us to be people, not illnesses. We aren’t two schizophrenics, three bipolars and the suicidal librarian. We are just ourselves, playing games, watching television, talking, interacting. Nothing much.

While I am waiting for my ride back home, the nurse smiles at me and hands me my belt. I put it on with newfound respect. Respect for a powerful disease and respect for my grandmother who got through it.

I wonder what has become of those I had the privilege to meet in the hospital. One of the hospital rules was not to share contacts. Still I think of their names and their faces. I say prayers. I hope they do so for me as well.

Stability Interrupted: Should I Stay or Should I Go? by Jane

Stability Interrupted: Should I Stay or Should I Go?

By Jane

Depression Sneaks Up on Me

When I get depressed (and I think this is universal), time slows down radically. The hours and days drag out so long that I can hardly detect time passing. If I can get to sleep, there’s some relief. Sometimes, I lie awake all night obsessing about one thing or another.

Another symptom is the darkness. I will immediately know if an antidepressant works. It is as if someone has flipped a switch and turned on the light. Additionally, I lose my appetite. I can feel the calories burn off and lose weight much quicker than if on a diet. 

My concentration becomes sketchy; I find it difficult to read (my favorite activity). I just sit and stare at the TV. In this mood, I am interested in nothing. One of the hardest things to deal with is the obsessing. Once an idea is in my head, it’s stuck there.

I am slow to react to the reappearance of these symptoms. My meds have worked for so long, I just cannot believe they would fail. Finally, it is the time slowdown that is so difficult to get through when a day seems to last a week.

Suddenly, I am suicidal, getting these overwhelming urges. Making plans to commit suicide. I have enough pills in the house that I don’t need to know what a fatal dosage is; I can simply take a handful of almost anything to end it all. I could be watching TV, trying to read or sleep, and the idea suddenly enters my mind to get up and do it. Do not pass “go” or collect $200. I tell myself I cannot leave my cats alone, or upset my family. But the urge is strong. I can’t find a reason to stay alive. And staying alive is too painful to contemplate. 

My psychiatrist again raises the dosage of my antidepressant and encourages me to go to the hospital. When I demur, she agrees that I could stay home and fight this thing, but insists I sign a form promising to not kill myself. I sign the form, thinking how odd it is to do so. It means nothing to me. I decide it is simply a “cover-your-ass” kind of thing for the doctor, who did not insist I go to the hospital. She could always pull out the form and say, “Well, she signed this form saying she wouldn’t.”

I return home from my doctor appointment a little hopeful. But the symptoms continue. One evening, I delete all the emails I had received from a celebrity friend. I don’t want anyone to find them after my demise.

Sometimes, the thoughts about my cats and family don’t seem so important. Someone will take care of the cats, and my family won’t miss me that much. At the same time, I know how selfish this is and can’t believe I would do this to the people I love. Even though I have these strong urges, I tell myself that suicide is not an option; that people actually care about me, even if I can’t feel that they do.

One night I am watching the news and the newscaster reports that a certain antidepressant has been found to be the most effective. The next morning, I call my doctor and tell her what I have learned. I tell her I am desperate, and that I want to try this new medication. 

After a few days on my new antidepressant, the light is brighter and time is moving a little faster. I email my sister, telling her how depressed I had been and that I was even suicidal. She responds that she was also depressed about her life, feared losing her job and worried about her financial situation. I realize that I cannot commit suicide and expect her to pick up the pieces. I start to feel better and continue to see my doctor weekly.

Depression is a black hole, and I am not sure that anyone who has not experienced it can fully understand the feelings that accompany it. One often feels they would be better off to die than to sit there, unable to concentrate, obsessing, and watching the hands of the clock move imperceptibly toward a dismal future. 

I feel better as the weeks go by and am soon back to my “normal” stability, with depression just a memory. The only remnant I have is the twenty pounds I lost.

And that is a good thing.

What It’s Like to Suffer from Mental Illness by Gemma

What It’s Like to Suffer from Mental Illness

By Gemma

The Benefits and Risks of Medication

I was first diagnosed with schizophrenia in my late teens, and then bipolar disorder as a young adult. It is a terrible condition, which devastated me, and made me ill for years. It was a very emotional time for me and I had many thoughts of harming myself.

Medication is a good thing. Take it every day because it keeps you stable and well.

I take my meds like it’s the most natural thing in the world. It keeps you ticking, so you don’t forget to take it. It’s like when you first learn to ride a bike. You never forget.

That's what it is like to have mental illness. You know you need to take your medication every day without fail. Again, it’s like second nature to me.

I have tried three lots of medications and am now on two types per day, which enables me to function. Without it, my falls would be unbearable and the mania would set in, as well.

I would be unable to do the things I most enjoy, such as my artwork and writing poetry. They say that folks with bipolar are very creative, so bipolar has its up sides. But there are also the downfalls.

The lows are your inability to function clearly, which affects your everyday life.

Taking bipolar medication is the only way to take back your old happy stable self, as much as you are able.

It took a good few years for me to recover and become stable again. A person really needs this time to recover, but there are still parts of me that will take time a little longer to heal. It just does not happen overnight. It is a gradual process.

The medication I take has a lot of risks. Meningitis and the rare rash can be fatal, too. But I need this medication in order to stay well, so it’s worth those risks for me. Without these medications, you would become very ill with depression and mania, too.

When I was initially diagnosed, I spent a bit of time in a mental hospital. Now I see my doctor every three to six months for check-ups.

Having a doctor who listens is so important. I can be open with my doctor to explain how I feel in order for him to know how to treat me and with the right medication levels, and also what not to treat me with.

My first medication for bipolar made me gain weight. I went from size 11 stone to 15 stone, 7 pounds at the highest.

Now, I have switched to a new medication, which neither makes me gain weight nor makes me drowsy and is definitely the good side. I hate feeling drowsy, and I can lose weight again and feel and be healthier. I go to the gym, it really lifts my mood as well.

It’s very important that you be able to sleep well, too. People with bipolar need less sleep and medication can affect it, too. There are very many people with bipolar who take meds and have their sleeping patterns disrupted. This is very important. I try to sleep well too.

Bipolar was a struggle for me and the beginning was the hardest but the lows are very crippling and the highs are very emotional.

It’s like a rollercoaster ride—the biggest fastest ride you can imagine—and you never know what is coming.

It's how well you can pick yourself up after falling that takes a lot of courage — and to see that you are a very beautiful person inside.

People who care about things that happen in their lives are more vulnerable and fall more easily.

It takes a lot of guts and courage to recover. Honesty is important in recovery from a mental illness.

The ability to open up to your doctor and talk about yourself and your feelings as you express your feelings aids all aspects of the recovery process.

I will always remember my thoughts of harming and hurting myself. I will always remember the lows all my life, but it’s a thing of the past now that I am so much stronger.

Without medication I don't think I would be alive right now. It’s amazing what medication can do.

I will take this time to say that if anyone is suffering from a mental illness, seek help. It is never too late. Recovery is a nice feeling. I know at the end of the day that's it’s the medication that helped put me back together again and mended the broken pieces of my life. And, what is taking a few pills a day to feel well?

A Facilitated Conversation On Mental Health: A National Dialogue

A Facilitated Conversation On Mental Health: A National Dialogue
By Sharon Goldberg
On July 23, 2013, Marvin Spieler and I attended a facilitated community conversation about Mental Health as part of The White House’s National Dialog on Mental Health, sponsored by MH Mediate. On January 16, 2013, President Obama began this initiative to raise awareness of mental health issues and ultimately reduce the stigma associated with mental Illness. One vital aspect of these discussions is in the creating of community solutions. People throughout the country are being encouraged to discuss mental health related issues and determine the best course of action to improve mental health services in their own communities.
We were organized into groups and seated at round tables, each person having the opportunity to discuss various aspects of mental health as it related to services. Our table had three mental health service consumers. One individual not only received mental health services, she was working on her doctorate in social work and had been providing services to mentally ill clients. Another individual was a social work student intern. Another worked with troubled children and adolescents and was primarily concerned with obtaining mental health services for them. Our two facilitators had very little knowledge about the issues facing mental health consumers and acknowledged their enhanced knowledge as a result of our candid discussion.
The three major topics discussed were: (1) how mental health stigma affects our society and what we can do about it; (2) what barriers to communication about mental illness exist and how can we overcome it; and (3) what strategies we can use to ensure full access to mental health services. All ideas from these discussions will be transmitted to The White House.
Of the many examples of stigma, barriers to communication about mental illness and solutions to these problems discussed, most noted was the criminalization of mental illness in the recent mass shootings in Connecticut, Colorado, and Virginia involving persons with some sort of mental disturbance. Another example closer to home was the mentally disturbed individual who had pushed Kendra off a subway platform, resulting in “Kendra’s Law,” or AOT. Also discussed was how providers of mental health services, often themselves, stigmatize the mentally ill in that they are often selective in whom they wish to treat. The news media was also cited as a culprit for its stigmatizing headlines in newspapers and insensitive TV and radio news reporting.
Our conclusion about communication barriers to mental illness discussed included such varied factors as fear, culture, stigma, prejudice, blame, lack of training and lack of listening. We could improve communication by bringing in family, opening up to cultural understanding, and moving away from the medical model of treatment to a more humane approach. The patient is a person first, not a disease. We should stop the media from misrepresenting the mentally ill, and we should make it easier to navigate and access services.
The question of what problems need solving when it comes to obtaining better mental health services include housing, education, employment and community supports. As Marvin Spieler stated, “A home, a job, a friend.”
Overall, it was a very positive experience. I had the chance to express my views and get positive non-judgmental feedback. I believe these discussions will lead to a better understanding of mental health issues, more humane treatments and positive outcomes for consumers of mental health services.

Landmark Settlement for New York City Adult Home Residents

Landmark Settlement for New York City Adult Home Residents
By Jota Borgmann, Senior Staff Attorney, MFY Legal Services, Inc.
State to Fund At Least 2,000 Units of Supported Housing for Residents
On July 23, adult home residents in New York City reached a landmark settlement with the State of New York. The settlement ensures that thousands of residents of 23 large adult homes (see sidebar) will have the opportunity to live in their own homes with the services they need to succeed and be part of their communities.
The settlement follows nearly a decade of litigation in a related case, Disability Advocates, Inc. v. Paterson. The new case, O’Toole v. Cuomo, was brought by residents of three adult homes on behalf of approximately 4,000 residents citywide. The plaintiffs alleged that New York State unnecessarily segregates people with mental illness in adult homes in violation of the Americans with Disabilities Act (ADA). “This case puts a face on people with mental illnesses and our struggle to be integrated back into the community at large,” said Plaintiff Steven Farrell, a resident of Oceanview Manor Home for Adults in Brooklyn. The settlement offers adult home residents “freedom and the ability to grow,” said Plaintiff Raymond O’Toole.
The State agreed to fund at least 2,000 units of supported housing for adult home residents, and more if needed. Every adult home resident who qualifies will have the choice to move to community housing within five years. Supported housing is an apartment in the community that comes with rent assistance and support services. Residents can live alone or with roommates if they choose. The support services may include visits from case managers or help with moving, healthcare, shopping, medication, or personal care.  
Many adult home residents are excited about finally having the opportunity to move out of adult homes and have more freedom and choice in their day-to-day lives. “I’m thrilled about this settlement,” said Plaintiff Ilona Spiegel. “At my adult home, they don’t do anything to inspire you or encourage you to move forward. I know how to take care of myself. I want to work my way back to independence.”
MFY Legal Services, Inc. represents the adult home residents with co-counsel from Disability Rights New York, the Bazelon Center for Mental Health Law, New York Lawyers for the Public Interest, Urban Justice Center and Paul, Weiss, Rifkind, Wharton & Garrison, LLP.
Adult home residents in New York City who have questions about the settlement may call MFY toll-free at (877) 417-2427.

[Sidebar:]
The settlement will affect residents with serious mental illness living in these 23 adult homes:
Belle Harbor Manor
Brooklyn Adult Care Center
Central Assisted Living, LLC
Elm York LLC
Garden of Eden Home
Harbor Terrace Adult Home and Assisted Living
Kings Adult Care Center
Lakeside Manor Home for Adults
Mermaid Manor Home for Adults
New Gloria's Manor Home for Adults
New Haven Manor
Oceanview Manor Home for Adults
Park Inn Home
Parkview Home for Adults
Queens Adult Care Center
Riverdale Manor Home for Adults
Rockaway Manor HFA
S.S. Cosmas and Damian Adult Home
Sanford Home
Seaview Manor, LLC
Surf Manor Home for Adults
Surfside Manor Home for Adults
Wavecrest Home for Adults

“I Have an Illness...Shit!”

Editor-At-Large/As I See It
By Marvin Spieler
“I Have an Illness...Shit!”
I came down with mental illness when I was 16 years of age. It wasn’t until age 36 that I learned how to and want to break out of the revolving door. Twenty years lost. I couldn’t develop a real career. I wanted to be an urban planner or a high school teacher. I became neither. I was a professional mental patient. That was my career.
So many hospitals. I was advised to write The Patient’s Guide to Psychiatric Hospitals. I thought about it and said no. Living it was one thing, writing about it would have been harder.
You can fight the revolving door of hospitalizations. I fight my illness every day and WIN!  It’s not easy. At times I’d like my three meals a day handed to me by joining the chow line at a psychiatric hospital. That’s the easy way. NO! NO! NO!  I fight. What do I do to stay out? I’ll tell you: Here goes!
I don’t like to wash up and shave. But I do it! It’s a pain in the ass. I don’t want to look like a bum. I then feel self-conscious as a result. People look at you strangely. What are they thinking about me? So I shave as often as needed!
I don’t like going grocery shopping, cooking, and washing dishes after every meal, every day so I can eat! But I do it.
I don’t like taking my psych meds twice a day. I don’t even like setting up my week’s supply of meds in my pill containers! Why? Because it reminds me of my god-damned illness!  An illness the public fears. They think we’re violent. In reality, I can’t fight myself out of a paper bag! Violent? Me? That’s a real joke! Yet, if I tell a potential friend I have mental illness, guess what? He or she may not return my calls or see me again! Now that’s an illness I have to live with! They may start to fear me. They may not want to turn their backs on me for fear that I may slug them. My friends are limited as a result. I cherish the ones I have.
Because of my illness, I never had a good paying job. Why? I feared success! Success made me feel uncomfortable. Tension, anxiety would result. I’m shy. I’m not a people person. In this day and age, you’ve got to be a team player. I’d rather work alone. You need to be a “people person.” I’m not. I don’t interact as well as I would like.
Look, it took most of my work-a-day-life to overcome fear of success. By the time I conquered this problem, I was too old to get a real paying job.
You may say he means fear of failure. Most people who don’t succeed have this. Not me. Success was always mine to a point. Then I’d quit, get fired, or become psychotic.
Yes, the illness gives me limitations that hurt  me! Not someone else. I’m feared. Ha!
Housing! Tell me about housing! I had a subsidized apartment till recently. What happened? The rent kept on going up but the subsidy didn’t. I had to move in with a friend. I couldn’t afford to live even in Newark, New Jersey! My check isn’t enough to pay rent, food, and other essentials.
Depending on your personal viewpoint, the above article may sound negative. However, to me I have a great deal of accomplishments. Whether I like taking my meds or not, I take them daily. It is now in excess of twenty-five years on medicines. I call the process being Hospital-Free. A record I’m proud of. As a grown-up, there are certain things you must do to be able to call yourself an adult. I mentioned a few. I’m happy with myself. I became an advocate for mental health. I do think positive usually. Success is no longer a problem. I’m a doer. I’m proud of who I am.
My advice to you is this. Take your meds if prescribed. Develop a support system that works for you. STAY HOSPITAL-FREE. When you feel comfortable with this process, then you’ll go on to achieve your goals in life!

Madness Network News Revisited

Madness Network News Revisited
By David Gonzalez, Activist
An Historic and Unprecedented Opportunity
Advocacy is both paramount and essential to human dignity and survival. There are those who advocate for others or believe that they are advocates for others who are unable to advocate for themselves and then there are those who tenaciously and vigorously advocate for themselves. Fortunately, I have almost always been of the latter, although I’m not ashamed to admit that there have also been times when I have desperately needed others to advocate for me.
Then there is activism. Wiki.answers.com defines activism: “Activism is similar to advocacy but where it differs is really the heart of activism. Activism usually involves more action that is direct in addressing issues, in a community for example. Activism is often done by people from within the effected community whereas advocacy is done both by people from within and without the effected communities.”
“Acting on my vision” my first act of activism as a mental health recipient was writing an article for a former NYC Department of Mental Hygiene's Office of Consumer Affair's newsletter in 1999 titled “You Have the Right to Remain Silent.” That was nearly 15 years ago. And while I have also been an unrelenting advocate for others on many occasions, my motivating passion for advocacy was affecting change through activism. But then unexpectedly, without warning, tragedy struck and my health took a devastating turn for the worse. As a result of my deteriorating condition I was physically disabled, unable to sustain full-time employment, and compelled to apply for disability benefits. My driving passion for activism had come to a sudden and screeching halt.
Spending the next couple of years attempting to regain my health and restore my passion to live, I had ample time to read and browse through saved copies of Madness Network News which my close friend and mentor, Ron Schraiber, had stored away in his archives. Ron has always been a major part of my support network and an unending source of information and inspiration for me. I was amazed by the list of authors who had penned articles for Madness Network News. They were highly respected pioneers in the “consumer empowerment” movement such as: Leonard Roy Frank (The History of Shock Treatment), Judi Chamberlin (On Our Own), Howie the Harp and Sally Zinman (Reaching Across: Mental Health Clients Helping Each Other) and a litany of other well-known activists and pioneers too long to list here.
To my dismay I discovered that this publication was no longer available to the general public, and so I sought out Leonard Roy Frank to explore the possibility of making Madness Network News once again available to the public in textbook format. I was elated and overjoyed when Leonard expressed interest and even supplied the missing MNN newspapers that I did not have access to. To my amazement, my passion for activism reignited. I purchased all the necessary hardware and software and I painstakingly began to scan, crop and resize every single page of Madness Network News. And as a direct result of Leonard and Ron’s unwavering support and assistance, the first copy of MNN in textbook format (which consists of the full six issues of Volume #4) was printed in October and is currently available. The remaining seven volumes, which contain all the remaining MNN issues, are ready for printing and publication. MNN truly embodied the essence of “nothing about us without us.” (If you would like to take advantage of this unique opportunity to purchase any of these volumes and to own a piece of our history please contact: MadnessNetworkNews@gmail.com)
The introduction to Madness Network News Volume#4 reads: “Madness Network News (MNN) began as a San Francisco Bay area newsletter in 1972 and then evolved into a quarterly newspaper whose readership extended to a national as well as an international level. MNN became, in essence, the voice and networking center for the “mental patient” liberation movement in the United States, unapologetically advocating for the full human dignity, self-expression and civil rights of people diagnosed and labeled as mentally ill. As a quarterly journal, Madness Network News published personal experiences, creative writing, art, political theory, and factual reporting from the point of view of people who had been on the receiving end of psychiatric treatment and who now found themselves treated as social pariahs, living in oppressive conditions and denied even the most basic aspects of personal choice and self-determination. Known for its use of humor and sense of irony, MNN wrote on its masthead that it covered All the Fits That's News to Print. Ceasing publication in 1986, Madness Network News remains an invaluable historical and primary source material that continues to elucidate the concerns and lives of people diagnosed and labeled as mentally ill both in the past and today.”

Recovery is the Level of Happiness We Obtain

Recovery is the Level of Happiness We Obtain

By Jeffrey V. Perry CPRP, MSM, Program Manager for Baltic Street, AEH, Inc. Peer Bridger Program

The pursuit of happiness is something we must remain vigilant in attaining. It is the central core of any human’s right to be. Recovery, in my estimation, is solely about one’s level of happiness in perspective to a worldview of satisfaction, not the individual short-term peace we could have. I hope my recovery will be long-term and self-sustaining. My life’s happiness, health, and mental stability are only as good as the level of satisfaction I have within, and put in place for, myself. My life goals in recovery are for this quality of life, which I see as what any person with a history of diagnosed or undiagnosed mental illness, substance abuse, medical problem or anyone with a compromised condition, deserves.

One’s awareness of their personal level of satisfaction is the most important factor in understanding if there is a “problem here.” It is often those undiagnosed individuals who have not addressed their situation by getting help, treatment, or services, who feel their sense of satisfaction diminished or who are in a total denial of any problem, and fight an uphill battle; while those diagnosed face other struggles, such as a search for any level of recovery, which is supposed to, by definition, be the down-hill fight. When you find the right combination of treatment for yourself, there is a better chance for recovery. But oftentimes, treatment may not focus on any level of recovery, and instead focus only on symptoms management. This, yet, at the cost of a diminished level of personal happiness and a lackluster recovery that takes time away for one’s regular life pursuits, cloaked in a stigma of social inferiority, particular in today’s I-based “IPod” existence.

We have being fighting against stigma on many fronts in our recovery, yet never did we conceive that it would in fact increase rather than be eliminated. As technology becomes more refined the gap between those looking for real happiness becomes much wider, because we have to wade through every new wave in technology to understand what we need in order to be happy again. Not to mention the high prices that we can never afford while in economic symptom arrest.

While under symptom management, in many instances, when our possessions are taken away for old safety-based reasons, they are never accounted for, or remembered (by the confiscator), or promptly returned. Where others would be furious, we become justifiably upset, yet, we, and our possessions, may be dismissed to causality.

So, we get to understand that life can be cruel, even under the direct care of others who prefer to see us however is most convenient at that particular time (not to single out any institution or individual). It seems to me that it is second nature to take advantage of the disabled, who many look down upon, or simply have low regard for in contrast to their “able” selves, and who believe that the disabled, of course, are naturally less happy, or, at least, they should be. It is indeed a miracle if a disabled person is happy. When will we each admit that we are all disabled or handicapped in some way? Is it not only about personal fulfillment or about accomplishing tasks?

One of the failures of symptom management is that it has not yet helped people rise to the level where they can find the kind of work that fulfills them. Medication cannot motivate a person or inspire them. And it certainly may help us do that which we want not to do, like not thinking clearly, being irritable and bothered by everything, or just not feel well, and possibly even behave in a negative manner. But, all in all, it’s about progress, isn’t it? We must move forward like anyone else. Right?

Note: This essay is from, A Peer on Peer Perspective in Psychiatric Health (In Prose and Poetry) by Jeffrey V. Perry, CPRP available in e-book formats. For more from Mr. Perry, please visit http://www.jeffreyvperry.com

Editor at Large: As I See It, Some random thoughts about our plight part 2

Editor at Large: As I See It

A Column by Marvin Spieler

Some random thoughts about our plight part 2

Goodbye Dr. Welch

Yesterday I said my official goodbye to Dr. John Welch. I see him one more time next month, when he goes into retirement for good. I have been seeing him for the last fifteen years in an OMH Psychiatric State Clinic.

This is a totally unusual situation for a publicly run and funded mental health program. It has been my understanding that therapists, especially, but psychiatrists as well, usually don’t stay in any one program for an extended length of time. They either get a promotion, work in a more convenient location when an opportunity develops, or move on to another agency for better pay. Some mental health professionals leave the system entirely. The salary is not adequate compensation for the stress level of the job. Caseloads are overwhelming. Because of the aforementioned reasons the turnover is quite high. In the end, the client-patient-consumer is actually the one who loses out the most when the continuity of care does not have a chance to develop.

The mentally ill are most often very wounded souls. Whether due to the nature of their biochemical disorder, or being a victim of (verbal, physical, psychological, sexual) abuse, the issue of trust is a big problem. It can take years for a firm bond to develop between patient and therapist or psychiatrist. Change takes time and trust is crucial.

When therapists or psychiatrists come and go for their own benefit, it causes much harm to the client-patient-consumer. The point can be reached where the recipient of services builds a wall around themselves, never more to engage in anything less than superficial communication with a mental health professional. This, to my knowledge, has always been the case with the public mental health system.

For me to have the opportunity to see Dr. John Welch for so many years is totally extraordinary. I have benefited from a firm relationship that has taken years to develop and grow. I have always hoped for continuity of care, but rarely have had it occur. With Dr. John Welch, the journey together has been a good one, with no regrets. The time has been well spent.

Yesterday, I reminisced with Dr. John Welch for more than an hour. I went on and on, aware that I was spending beyond the usual hour he generally gives me. I also knew he could have cut me off, if he so desired, but he didn’t. I think we both desired and enjoyed our last real time together. I said all I wanted to say to him. Thank you, Dr. John Welch.

Foreign-born Psychiatrists Should Learn the Language

Psychiatry is an art and not yet a science. Psychiatry requires communication much more than medical care. Doctors, even specialists, rely primarily on lab tests. It is the interpretation of these tests that separates a mavin from the others.

Too many foreign-born psychiatrists think they can speak the language. Very few do unless they study the language and its idioms. A case in point: a foreign-born psychiatrist is frustrating a patient admittedly unintentionally. The patient throws up his arms and says, “I've had it!” The psychiatrist then wanted to hospitalize the patient as suicidal! Sounds impossible? No, because it happened. The psychiatrist did not know that idiom causing a miscommunication. The patient spent the rest of the session trying to assure the psychiatrist that he was okay.

Foreign-born psychiatrists would be well advised to go to night school for immigrants to really learn the language.

Parachute NYC: A “Soft Landing” for People in Crisis

Parachute NYC: A “Soft Landing” for People in Crisis

The New York City Department of Health and Mental Hygiene announces the launch of Parachute NYC: an innovative citywide approach to provide a “soft-landing” for individuals experiencing psychiatric crisis.

When someone is in crisis—but not at imminent risk to self or others—s/he can be referred to Parachute NYC by calling 1-800-LIFENET. The person will be seen at home by an enhanced Mobile team within 24 hours of the referral. The enhanced Mobile team will have the ability to work with the person as frequently as needed—even daily—for up to one year. The team will help the person to develop a network starting at the first meeting. This network will include the person and other people s/he chooses, such as family, friends, vocational staff, etc.

If the person receiving services needs a different level of care than can be provided at home—and is not at imminent risk to self or others—s/he can be referred to the Crisis Respite Center. The Respite is a home-like, warm, supportive and safe environment for people to stay during times of heightened distress. People may stay at the Respite for up to fourteen days. During their stay, Respite guests will continue to work with the Mobile team. The Respite is staffed with a mixture of peers and behavioral health professionals who are available 24/7 to offer peer support, wellness education and skills building. At this stage, Mobile and Respite services are available only to people living in stable housing.

People who are not interested in receiving treatment from the Mobile team may also stay at the Respite (e.g., someone who already has a mental health provider but is experiencing or anticipating a crisis). These individuals must provide a current clinical evaluation or consent to an evaluation by the Mobile team.

There is significant peer involvement in every component of Parachute NYC; besides mental health services, peers will work as peer health navigators to integrate medical health into the continuum of care.

All referrals to Parachute NYC are made through 1-800-LIFENET.

Parachute NYC also includes a peer operated Support Line for people to call when they are experiencing emotional distress to connect with a trained operator who has had similar experiences. Anyone can call the support line by dialing 646-741-HOPE. All services are confidential and there is no need for a referral.

Currently, Visiting Nurse Service of New York provides enhanced Mobile services and Community Access provides Respite for residents of Manhattan ages 18-65. In Brooklyn, services are exclusively for young adults age 16-25 experiencing a first episode of psychosis. Woodhull Medical Center operates the Mobile team in Brooklyn and Respite is provided by Services for the Underserved for 18-25 year-olds and by New York City Children’s Center for 16-17 year olds. The Support Line, also operated by Community Access, is available to anyone in New York City. Services will open in Bronx and Queens, again for people aged 18-65, in late 2013 and early 2014, respectively.

Please visit our website for additional information: http://www.nyc.gov/html/doh/html/mental/parachute.shtml 

Book Ends: The Center Cannot Hold by Elyn R. Saks

Book Ends: The Center Cannot Hold by Elyn R. Saks

Reviewed by Columnist Kurt Sass

A “broken brain” that accomplished a great deal

In the very last chapter of Professor Elyn Saks’ book The Center Cannot Hold: My Journey Through Madness, she states that the reason she writes and speaks out is: “to bring hope to those who suffer from schizophrenia, and understanding to those to those who do not.” I just have one message for her: Mission accomplished! After reading about all the trials and tribulations that Ms. Saks has endured and survived, I believe anyone who is fighting the daily battles with schizophrenia, or any other psychiatric disability, will come out of the experience with a renewed spirit. Also, I believe anyone who has never experienced schizophrenia will find reading this book an extremely educational, eye-opening experience.

One very strong point about Ms. Saks’ writing is her honesty and candidness, especially when it comes to her struggles with remaining on her medication. Ms. Saks points to many instances when she is doing fairly well, but then decides to lower or stop taking her medication altogether and then almost immediately relapses into psychosis. Many writers would not write anything at all that might shine a negative light on themselves, but Ms. Saks explains the reasons why she (and many others) make these decisions about stopping medications.

It took Ms. Saks many years to come to terms with the fact that the medication does help keep the psychotic thoughts away and that she must continue to take it, even when feeling well. She discovered the reason she would stop taking medication was that she would feel that each time she put a pill in her mouth it was a reminder that her brain was profoundly broken and defective, and that by taking pills she wasn’t being her authentic self.

In addition, Ms. Saks said she had to come to terms and accept that she had a mental illness. She tells the story of an analogy a friend told her about a riptide, that your first instinct is to fight it, and you use all your energy fighting it. Ms. Saks was using all her energy fighting her diagnosis of mental illness by stopping her medication. Once she accepted the diagnosis and allowed the medication to do its job, things continued to get better.

Ms. Saks also goes into great detail about the importance of talk therapy as well as medication in her recovery. There were many examples in the book when she was completely off medication and feeling psychotic and either reached out to others (friends, therapists, etc) or they reached out to her.

Perhaps the most powerful part of the book is the amazing disparity of treatment she received while going through her various psychotic episodes. Many times it simply came down to a matter of who noticed the behavior or which hospital she was admitted to. The most blatant example of this was when she was admitted to one hospital (she was talking incoherently, but not behaving violently at all) and put in four-point restraints for days. Just a short time later, exhibiting the same exact behavior, a different hospital nearby felt that no restraints were necessary at all. And it turns out they weren’t needed.

Professor Saks is a Graduate of Oxford University and is a Professor at the University of Southern California Gould School of Law. She was able to achieve all this while having numerous psychotic episodes throughout the years.

The Center Cannot Hold: My Journey Through Madness has won numerous book awards and was on the Time magazine top ten best-sellers list for Non-Fiction books.

Pullout: “...each time she put a pill in her mouth it was a reminder that her brain was profoundly broken and defective, and that by taking pills she wasn’t being her authentic self.”