Editor at Large: As I See It

By Marvin Spieler

Some random thoughts about our plight

Government Cuts

I bragged to a new counselor about the length of time I’ve been hospital-free. In a way I want him to know who I am in this area. He related without mentioning a name a consumer who has been hospital-free an extremely long period of time. However, this ended recently. Why? Through no fault of her own, Medicaid took her psychiatric medicine off the drug formulary, a list of approved drugs for the Medicaid program. She can no longer receive from her pharmacy the medicine that helped her stay hospital-free for so many years. The new medicine, I assume a generic or a much cheaper medicine, was prescribed. Unfortunately, this wasn’t helpful and caused a relapse. This was a totally unnecessary consequence!

Hospitalizations can be costly in many ways. First generation psychiatric medicines are in generic form making them much cheaper. The government’s theory is this: a hospitalization is cheaper than the higher monthly cost of the newer second generation of psychiatric medicines. However, from personal experience and that of my friends, the effect of the newer medicines are much better. You can stay out of psychiatric hospitals and have a higher quality of life. Besides, to have symptoms return by taking generics usually is detrimental in a number of ways. Your quality of life can hit an all-time low. Paranoia or depression or manic episodes can reappear. One’s functioning may stop altogether unfortunately.

A hospitalization may be recommended to readjust to a new combination of medicines. This would be an ego-deflator. Also the shock of a ward’s environment can be that of “a house of horrors.” We may have put the idea of a possible hospitalization behind us. Also, we may lose our self-confidence as well as a held job. Income will probably be lost. Every day enjoyable activities may stop as well. Our high quality of life can be lost unnecessarily.

We have regressed through no fault of our own. The government’s theory of saving money put us back in a hospital. This is a downer. Other means of saving money should be found.

The solution may be for legislators to spend a week or more on a psychiatric ward. If they personally knew what it was like on a ward their current policy would stop and a sane policy of help will occur.

Penny wise and pound foolish. However, the disruption to our lives supposedly to save money is extremely severe. I feel we are receiving cruel and unjust treatment as a result of government financial policies.

Training of Psychiatrists

Under Obamacare there is a provision for doctor training. I propose that doctors be offered scholarships to go into geriatric psychiatry to meet the need to alleviate the shortage that now exists. I propose a 10% refund in college loans per each year of service as a geriatric psychiatrist not to exceed five years of loan forgiveness.

Apartment Programs

More of an attempt should be made to join consumers together who will share an apartment. This can more easily be done if consumers know, trust and are friends from the provider’s residence program if they have one. Also if a bad match exists in a supportive or supported apartment, the consumers should not be forced to coexist. Literally putting consumers together with no consideration of individual lifestyles is definitely wrong. Consumers are human beings with feelings and emotions. Showing no regard for an individual’s needs in apartment programs is cruel and should be avoided.

Note: How would you improve the mental health system? Let me know. Write to me at newyorkcityvoices@gmail.com or snail mail me at the address on page 2. Include a way to communicate with you if I think it is necessary to do so. All correspondence will be kept confidential.

Consumers Can Be Great Service Providers

By Kurt Sass

Peers have a special way of establishing trust with clients

There is a growing trend for the better in the mental health field to hire more mental health consumers, especially in direct care positions. As little as 15-20 years ago, this practice was relatively non-existent. During my most major depression 12 years ago I did not run into a single mental health “professional” who ever identified him or herself as a fellow consumer. Not a single doctor, therapist, clinician, or anyone else. I spent 2 years getting advice from people (though good-intentioned for the most part) who had no real first hand experience of what I was going through.

The closest I came was when I was already on the road to recovery, and my new therapist recommended that I start going to support groups in addition to seeing her. It was the way she explained it that really hit home with me: “Now I know we’ve made a lot of progress in the few weeks since we’ve met, but I feel you really need to talk to others that have gone through exactly what you have. To be honest, Kurt, I myself have never had Major Depressive Disorder or Bi-Polar Disorder, so I can’t honestly tell you that I know how you feel.”

And she was so correct. How would most therapists or psychiatrists be able to relate to lying in bed helpless for months at a time, or having constant suicidal thoughts, or not being able to sleep for days on end due to non-stop, rapid, racing thoughts? With insight like that, no wonder she stayed my therapist many years.

Once well enough to work, I was fortunate enough to find employment with Community Access, an organization that helps individuals with psychiatric disabilities. They also are dedicated to hiring at least 51% consumer staff, destroying the myth that mental health consumers are bad hiring risks. (Don’t worry, if you don’t have a psychiatric disability you can still apply—they don’t discriminate!)

My first position at Community Access was as a Service Coordinator, and I can’t begin to tell you how many times being a mental health consumer myself helped my “clients” (we actually use the term tenants as they each hold their own lease in many of our housing programs) through a difficult situation. I can’t tell you how many times, but I’m going to tell you of two right now.

Tenant AB (HIPAA privacy regulations) came to the office one day (which is located in the same building he lives) and he looked awful. In fact, he had progressively looked worse over the previous few weeks. He kept saying his stomach hurt him very bad, but had no idea why. I brought up the possibility of side effects from his medications as a possible cause. He did not want to discuss his medications at all. I then mentioned to him that once I had very similar side effects when I took Lithium. “You took Lithium?” he asked in utter surprised. Why? He inquired. After explaining briefly my mental health history, I told him about the side effects I had experienced with Lithium, but that I had talked to the psychiatrist, who made a change to the medication whose end result was the disappearance of these side effects.

Once AB knew my story, he really started opening up to me. He told me all the medications he was taking and about the recent changes in these meds, which seemed to coincide with his severe abdominal pain. I was able to convince him to see his psychiatrist, who ended up adjusting his medications to a level his system could tolerate. Without AB’s trust in me as a fellow consumer, he probably would have never revealed the information needed to get him the help he needed.

Tenant CD came into the office one day completely distraught. She felt that she needed to go the psychiatric emergency room (ER), but was afraid of what would happen if she was admitted, as she had never been there before. Having been in numerous psychiatric wards myself, I was able to tell CD both the good and the bad experiences I had there. CD said she felt very relieved after speaking to me, as she thought they simply tied most people to their beds, but felt much better about her decision to go to the hospital knowing someone who had actually experienced it as a patient. I was able to escort CD to the psychiatric ER and help ease and comfort her through the experience.

The bottom line is that clients (for lack of a better term) feel much more comfortable and empowered when at least some of the staff they encounter are their peers. Fortunately there are organizations such as Community Access out there that actually go out of their way to hire people with psychiatric disabilities, not just to give them an opportunity, but also because they realize what a valuable asset their experiences bring to their organizations.

Book Review: Sugar & Salt-My Life with Bipolar Disorder

By Kurt Sass

Sugar and Salt by Jane Thompson is her story of decades-long battles, setbacks and triumphs against bipolar disorder.

One thing that sets this book apart from other writings from people dealing with bipolar disorder (Manic Depressive Disorder) is that Ms. Thompson does not glamorize the manic phases of the disorder. I’ve read other people’s accounts of their bipolar disorder in which the emphasis is so heavily on the manic phases and the deeds done during those periods (shoplifting, wild sex-capades, etc.) it almost makes the outsider crave for a taste of the experience of the mania.

While it is true that many people do feel a burst of energy and creativity during a manic phase, Ms. Thompson gives the full picture of mania, inclusive of a constant state of confusion and inability to concentrate—she once went through a period having 27 jobs in 3 years—as well as extremely poor decision-making and its consequences. She does talk about hyper-sexuality during her manic periods, but not to glamorize it, yet to explain that during her mania she mistook this sex for love.

The other thing that sets this book apart from other writing from people with bipolar disorder is that she does not write only about her bipolar disorder. I have read other people’s accounts in which every single sentence was in relation to illness. It was refreshing to see that Ms. Thompson’s bipolar disorder does not define her, that it is only one part of her.

On a personal note, what really kept my interest was the many similarities between myself and Ms. Thompson. We both have battled bipolar disorder for decades, were both misdiagnosed for years, and both had parents that were never diagnosed. I am positive that anyone dealing with bipolar disorder can relate to Ms. Thompson’s story. I would particularly want to point out the appendix starting on page 155 for some very helpful advice.

In summary, I would recommend Sugar & Salt to anyone who would like an honest and accurate account of what it truly feels like to endure and live with bipolar disorder as well as anyone currently going through the disorder to see how a long-time member of the club has handled it successfully.

MFY Legal Services, Inc. Announces New Legal Clinics to Assist with Obtaining Access-a-Ride

By Dinah Luck, Senior Staff Attorney, MFY Legal Services, Inc.

It’s complicated, let attorneys help free of charge

Access-A-Ride (AAR) is an accessible transportation system operated by the Metropolitan Transit Authority (MTA) for people who cannot use subways and buses due to their disabilities. The Americans with Disabilities Act (ADA) requires the providers of public transportation to provide comparable public transit services to people with disabilities. People who are unable to take public transit due to a psychiatric disability are eligible for AAR, but they might face particular problems in the application, assessment, and appeal process.

Applications

Although the application can be found on the MTA website at http://www.mta.info/nyct/paratran/access_application.pdf, the MTA has told MFY that they only accept applications mailed to the applicant by the MTA. Therefore, applicants should call 877-337-2017 to obtain the application and an appointment for an in-person assessment. The application requests, but does not require, medical documentation. However, an applicant should provide a detailed letter from her treating psychiatrist or therapist describing the applicant's functional limitations. A letter stating a diagnosis is not sufficient; the letter should describe the symptoms that prevent the applicant from taking public transit. An AAR official reported to MFY that the MTA does not defer to a person's own doctor, but instead relies upon its own assessment. Nonetheless, it is optimal to submit a detailed letter from a treatment provider because it will increase the applicant’s chance of being approved.

All applicants are required to undergo an in-person assessment that primarily involves testing for physical disabilities. AAR's reliance on in-person observation over reports from a person's doctor can make it very difficult for a person with a psychiatric disability to be found eligible. For example, while a physical test can be given to an applicant who claims that a physical disability prevents her from climbing stairs, it is more difficult to ascertain how an applicant’s anxiety disorder impacts her use of public transportation. An applicant with a severe anxiety disorder, for example, can appear calm at an assessment, leading to a denial of the application even if she provided a compelling and detailed letter from her treating psychiatrist or therapist about the functional limitations to her accessing public transportation caused by the disorder.

The Disability Rights Education and Defense Fund recommends that people whose disabilities are not easily evaluated by an in-person functional assessment tell the evaluator that their disability cannot be assessed in that format. An applicant with a psychiatric disability should direct the evaluator’s attention to her doctor’s letter, and explain why her limitations cannot be observed during the in-person assessment. An applicant who cannot advocate for herself can bring someone—a friend, social worker, therapist, or family member—to help. Because the eligibility determination relies so heavily on in-person observations at assessment centers, rather than on reports of functional limitations from applicants’ treatment providers, the AAR assessment may have the effect of discriminating against people with psychiatric and other invisible disabilities.

How to Appeal a Denial of an Application

If an applicant is denied AAR, she has a right to an appeal. But the AAR appeals process suffers from several procedural problems that prejudice appellants. The agency is required to provide appellants with a notice that states the reasons for the finding and “an opportunity to be heard and to present information and arguments.” However, the AAR notices are not individually tailored to the applicant. The AAR notices simply provide a laundry list of denial reasons. For example, the denial notice for a person who applies due to an anxiety disorder may include a list of irrelevant and confusing statements about physical disabilities, such as “You are able to go up/down subway steps. You are able to travel three to four blocks to fixed-route bus/subway station.” It is difficult for an applicant to prepare for an appeal based on a notice that contains only conclusory and possibly irrelevant statements.

The difficulty in preparing an appeal is exacerbated by the fact that the MTA does not provide the applicant with a copy of the record of her case prior to the appeal, nor does it have a process for the appellant to secure the record prior to the in-person or written appeal. In fact, the MTA has told MFY that it has no obligation to do so. The only means to obtain the record is through a Freedom of Information Law (FOIL) request, which is time-consuming and requires the appellant to pay for copies of her records. Although MTA points to the availability of the FOIL process as a possible remedy of its failure to provide the record on appeal, MFY has learned that it refused to adjourn an in-person hearing until the FOIL records were produced.  Without the record, an appellant cannot examine the assessments or other evidence relied on by the agency when it denied her application. This leads to an applicant being confronted at the hearing with evidence she's never seen, depriving her of the opportunity to prepare a challenge to the evidence.

Finally, although the MTA offers two options for an appeal—in writing and in person—it has no publicly available written procedures that describe its appeal processes. Based on the information we have been able to gather, MFY recommends the in-person appeal because testimony from the applicant and, if possible, a mental health professional can be more compelling than a paper review. In addition, a paper review suffers from the same defects as the initial assessment—the decision will be based primarily on the AAR in-person assessment, which the MTA weighs more heavily than an assessment by the applicant’s own treatment provider.

MFY Legal Clinic to Assist AAR Applicants

To try to remedy these and other problems, MFY Legal Services, Inc. and Pillsbury Winthrop Shaw Pittman LLP are launching a pro bono project to help people obtain and maintain eligibility for AAR services. We’ll be holding AAR Legal Clinics at independent living centers, senior centers, and other community locations. During those clinics, volunteers will provide a range of services, including helping people fill out the AAR application, request MTA records regarding an adverse eligibility determination, appeal a denial of AAR services to the Paratransit Appeals Board, appeal a suspension of AAR services, or file a complaint about AAR services with the MTA. To find out the details regarding the next clinic, please call 212-464-8110 or go to www.mfy.org.

Living in a Horror Movie

By Ashley Popoff

I still hallucinate when the sun goes down

My name is Ashley Popoff and my story starts when I was 10 years old and was attending 5^th grade in public school. For some reason, I was having thoughts of suicide. At 10 years old, no child should be suicidal. It was terrifying for me and my parents. No one knew what was wrong, and some people thought that I was cutting myself just for “attention.” So I was left untreated and suicidal until I finally went to a doctor at age 14. This was during my first year of high school. In my home town, high school starts in the 9^th grade and goes through the 12^th grade.

I was starting to wonder what was wrong with me. So I went to see a doctor who thought that I was bipolar, so he started me on different types of medication. I went to the doctor every Friday for about 2 years. He was trying to get my meds straight and couldn't figure out why it wasn't helping. It made things worse for me, always being on some type of medication. My eyes got blurry; my hands would shake; I would go into catatonic states of not speaking or moving; and I got gallstones which had to be removed when I was 16. That same year while I was in 10^th grade, I was being home schooled because of my symptoms of paranoia, depression, delusions and hallucinations. I was unable to go to public school because I missed so many classes due to my symptoms. I thought that every one hated me and that every one was out to get me. It was terrifying to walk down the hallways at school and all of the teachers thought I was a bad student because my grades were bad from missing so much school. I wish I could tell them now that I wasn't a bad student, that I just had an illness. I still can’t walk into a school-like building because it creates so much anxiety for me.

I was later diagnosed with schizophrenia, and put on antipsychotic medication to help with some of the symptoms. The way that my illness affected me was terrible; my doctor told me he believed it must be like living in a horror movie. I couldn't go outside because I was afraid all the people were watching me from outside their homes and were out to kill me. I couldn't walk past something that was a potential for people to hide behind: things like parked cars, bushes, trees, hallways, doors, fences; things like that terrified me. I couldn't ride in cars because I was afraid that we were always going to crash and I was doomed to die. I didn't like going into stores because I was afraid all of the security cameras were there to watch me and to make sure I couldn't get away, and that the other shoppers were following me. It affected my life to the point where I couldn't do things that I wanted to do and I did things that I wished I had never done.

Now I am 18 and cannot work because I still have fears of people. The fears aren't as bad as they were, but talking to strangers still makes me go into a panic mode, and I freak out. I tried working once but the time came that I had to talk to someone I didn’t know and I panicked. I couldn't speak, I couldn't move, my heart was racing and I was just shaking. I am unable to work because of my schizophrenia and I hope I can live on disability for the rest of my life. I had a dream once to be a baker and open up my own pastry shop, but my fear of people and schools keeps me from going to a college to train and keeps me from dealing with people if I were ever to open up my own bakery. I still hallucinate, and when the sun goes down and the house is quiet I see things that aren't there and they terrify me so badly that sometimes I can’t sleep. Sometimes I see aliens at the foot of my bed watching me or dead people staring in the windows at night. The things that I see are absolutely terrifying. I have never been violent and I hope that with this story I can create awareness about schizophrenia. Until about a week ago my best friend of 8 years found out that I have schizophrenia and she didn't even know what it was. Not a lot of people know what it is and I always wish that somehow I can create awareness, so people aren't afraid and so that people are more accepting of people with severe mental illness.

Nothing About Us Without Us?

By Angela Cerio, CPRP

Not at the American Psychiatric Association’s annual conference

I went to the APA conference in Philadelphia May 5^th and 6^th 2012 as press, representing New York City Voices, in order to assess whether person-centered, recovery-oriented principles had filtered up to the psychiatrists. In my opinion, the answer is “no”—at least among most of the presenters. The only “consumer” presenter I am aware of was Dr. Kay Redfield Jameson. (See Melissa Farrell’s article in this issue.) I was reminded of the NY State Office of Mental Health Annual Research Conferences which I had attended over 10 years ago. Ken Steele, the founder of City Voices and the Mental Health Voter Empowerment Project was the only one of “us” among the presenters. Yes there was definitely an “us and them” atmosphere, both back then and at the APA.

One big difference between “then” and “now” is the reduction in value of the “freebees” the pharmaceutical companies are allowed to use to lure the psychiatrists to their displays. One workshop “Psychiatrists and Pharma: How Should They Interact?” addressed the issue of “samples” left by pharmaceutical representatives when they visit the psychiatrists. It was suggested that these samples should be “pooled” for use by all physicians within the practice or agency.  Press was not invited to the special “educational dinners” at swanky hotels in the area sponsored by the various pharmaceutical companies.

There was an “Ethics Tract” and I attended an interesting workshop: “Ethics and Diagnosis: The Medicalization of Predicaments.” It was sparsely attended compared to all the workshops on medication, diagnosis, and the financial considerations of psychiatric practice. I knew I was in the right place when the presenter stated, “Those of you who came to this session are probably not the ones who need to hear what we have to say.” They spoke about how distressing life events are often diagnosed in order to justify billing for medication and treatment, and how that diagnosis can lead to lifelong interaction with and dependence upon the mental health system.

I had originally planned to go to Mind Freedom International’s protest over the new DSM5. And I did. (See photos.) On Saturday, I marched with my peers from the “Society of Friends Center” to the Philadelphia Convention Center.  One marcher dressed up as a psychiatrist, complete with a huge hypodermic needle.  This protest was widely advertised as “Occupy the APA”, and there was obviously a lot of security in place at the convention center to prevent us from doing so.  The march included an event outside of the convention center in which people who had been diagnosed by psychiatry held signs in front of them with the diagnosis they had been given, tearing them up and holding up new signs with labels of their own choosing such as “human being”, “wounded healer”, “human rights activist”, “advocate”, or whatever words they wished to use to identify themselves. George Ebert of the Mental Patients Liberation Alliance in New York State, provided motel rooms for those who stayed over until Sunday to hear speakers Robert Whitiker, author of Mad in America and Jim Gottstein, Esq., founder of the Law Project for Psychiatric Rights from Alaska, a well known human rights activist.  An entire bus of protestors came in from Albany, so New York State was well represented.  Spearheaded in Philadelphia by Susan Rogers of the National Mental Health Consumers’ Self-Help Clearinghouse, this protest was widely covered on the Internet by Mind Freedom; Lauren Tenney and Dan Hazen on Youtube, and on websites www.theopalproject.org and www.mindfreedom.org.  Any event which brings together people who want to see change in the field of mental health, I find to be exciting and empowering, and this protest was no exception.

The 2012 APA Conference in Philadelphia

By Melissa Farrell

My perspective on the booths and presentations

I attended the American Psychiatric Association’s 2012 Annual Conference in Philadelphia on the weekend of May 5^th through May 7^th. I found the conference insightful in some ways, but lacking in many other areas. The areas that I found progressive included a Swami, who was also a psychiatrist, presenting his research findings on the benefits on alternate nostril breathing. A yoga instructor I had years back taught me to practice alternate nostril breathing. I was practicing this for a while when I was anxious and could not sleep at night; I did not want to give into the temptation of popping a pill to quiet my mind.

My traveling companion Angela Cerio and I spoke to a psychiatrist who agreed with us about the benefits of wellness, health and exercising. The psychiatrist even stated that she would rather her patients go to yoga than to have them medicated unnecessarily. 

What I was really appalled by was the excessive number of manufacturers present pushing Electroconvulsive Therapy (ECT) machines. There were at least five manufacturers of ECT machines present. ECT is such a drastic treatment resort and the benefits are often questionable, not to mention the long-term damage that its use can cause to patients. In my eyes this machine should not be such a hot commodity and so broadly advertised. This type of therapy should not be publicized the way it is, because of its known side effects. 

I also did not like the large presence of pharmaceutical companies either. I spoke to a representative who was there to promote Equetro, a form of Tegretol. I told him that I noticed there are not many so-called mood stabilizers on the market and he agreed with me. I noted that there is an over-abundance of neuroleptic or anti-psychotic drugs that are being produced. It is known that these types of drugs are prescribed by psychiatrists to children and adults who do not have the disorders that the drug was originally intended for. There are a lot of lawsuits for off-label use.

Additionally, I did not see any services that promoted alternatives to drugs at any of these booths. I did not see any information on orthomolecular therapy.  This type of therapy often involves high potency vitamins, supplements and proper nutrition.

I listened to a presentation by an Indian psychiatrist elucidating how our modern day Western psychotherapy is based upon the Bhagavad Gita, a sacred Eastern text. Highlighted were the text’s moral statements and the laws of the Universe like treating others with kindness, practicing gratitude and being humble. All of these principles are applied to the Western psychotherapy we have today.

Throughout the entire conference, I did not hear anyone using the words “peer” or “recovery.” The only notion of “peer” in this conference was by a peer provider, Dr. Kay Redfield Jamison, a prominent researcher and clinician and an authority on bipolar disorder. She was the only individual at this conference who disclosed about her lived experience with mental illness. She teaches and researches at the very prestigious Johns Hopkins University. I found Dr. Jamison very inspiring. She spoke so eloquently and openly about her life. She spoke about the difference between clinical depression and grief. She revealed that her spouse, another famous researcher and clinician from Johns Hopkins had died about 10 years ago and although it was very difficult for her to deal with, it was grief and not clinical depression that she was experiencing. Dr. Jamison spoke about how we need to normalize our experiences and not accept a clinical label to what are simply normal emotional states. She also spoke about the difference between clinical depression and other normal life experiences.

I would have loved to see peers involved in the conference. I thought it would be really out of place for me to disclose to anyone at the conference that I have a mental illness. I would have liked to see less emphasis on pharmaceutical drugs and more on integrative-type methods used in treatment. In conclusion, I believe that treatment is not about making money at another person’s expense but about doing what is morally and ethically right and true.