Dear Media Matters - Does It?

The following is a copy of an e-mail I just sent to Media Matters. This falls in the pet-peeve/Mother Clucker creating category. This is what gets my feather's ruffled up!

I am very sensitive when the terms mental illness, schizophrenia, psychotic, etc., are bandied about incorrectly, but when an organization like Media Matters reprints it and basically blows it off as a shortcoming, I get really pissed off.

To Whom it May Concern:

My understanding is that you report when the media misinforms the public. Is that correct? I would like to see more coverage on issues related to Mental Illness. While there is little media coverage on issues related to mental illness, unless someone who is untreated has a psychotic episode and hurts people, misinformation does occur. Given by the number of articles that came up when I searched on the words "mental illness", I do not think much fact checking is going on by your organization in this area.

To that end, I will start submitting tips whenever I see errors in the coverage of issues relating to mental illness, specifically as it deals to policy issues about homelessness and incarceration.

However, I want to address an even more disturbing issue of your own reporting. The first article that came up in my search was "WND touts book claiming liberalism is mental illness", dated Nov. 24, 2009. The last line of the article was "Given WND's track record, I can only assume WND is engaging in a Rovian effort to accuse their counterparts of their own shortcomings. "

Mental Illness is not a shortcoming. People with schizophrenia, bipolar disorder, clinical depression and a list of other illnesses are sick, just like someone with Alzheimer’s. It is a brain disorder that affects the mind, but it is not a shortcoming. It is much more devastating.

By minimizing the often horrific effects of brain disorders categorized as "mental illnesses", you are creating an image of someone who has a mental illness as someone who can help himself or herself. People with brains disorders such as schizophrenia cannot help the fact that they are ill. They need treatment, not ridicule.

Not pointing that out in your critique of this book is just as damaging to the efforts made on behalf of the millions of people with real mental illnesses, as the claims made by the book itself are to liberalism.

Please, do a better job.

Sincerely,

Ilene Flannery Wells

The Earthquake Within our own Borders

When a tragic event like the earthquake in Haiti occurs, the hotlines are a buzz and now we can even text our donations to help the hundreds of thousands left homeless and in need. Everything is made easy for us. Our news programs flash the telephone and text numbers while bombarding us with devastating images. I just received my umpteenth e-mail alert.

While I applaud these efforts; the heartfelt generosity I see outpouring from my countrymen and women to strangers across the globe makes me wonder; how can many of these same people literally step over the homeless on our own streets? We divert our glances and quicken our pace. Sure, some of us give money to charities, but the homeless remain.

An earthquake occurred within our own borders a long time ago and we have been feeling the aftershocks for decades. The US homeless population rivals the numbers of people afflicted by the Earthquake in Haiti and up to a third have a severe form of mental illness. We have become so accustomed to it that we don’t even see the victims on the street anymore.

What happened? Well part of what happened was that beginning in the 1960’s, an explosion of former state hospital patients were released into our communities. The premise was that community mental health services were not only more humane, but less costly.

The whole process was coordinated poorly; housing could not be secured to keep pace with the number of patients being released and remains a problem today. This started the homeless problem and since housing continues to be a problem, so does homelessness. On top of that, the sickest of the sick were also released; those who, through no fault of their own, would never recover enough to participate in their own care. My brother Paul was one of them.

The flow of patients released into the community continued, unabated, over decades, and the homeless population continued to grow. So did our prison population. The sickest of the sick, not only do not understand they are sick, they do not have the life skills required to maintain their physical, let alone mental health.

Yes, I can hear you. Many people with a severe mental illness can live productive lives in the community. I am not talking about them. Yes, the community system can work for many people with severe forms of mental illness, but not all.

The sickest of the sick cannot manage the maze of rules and regulations they run into on the “outside”. They don’t even know how to cook their own food and buy their own groceries, yet they are expected to do just that. Adult homes are the last resort for people like my brother and now they will be closed due to the latest Supreme Court ruling that they are unconstitutional.

Virtually no long-term care facilities are available to people who are so sick due to a mental illness that they are made incapable of living on their own – to the point where they could die – unless of course, they also have a debilitating illness in some other organ of their body, or the person is over 64 or under 21. I know, it’s confusing isn’t it? But that’s the way it is. This is discrimination pure and simple.

I think about the hundreds of thousands of homeless people in our own country; a large portion of them are just plain sick and need our help. Many wind up in prison because of incidents that occurred while they were having a psychotic episode. They are all someone's son or daughter, sister or brother, yet we still just step over them or look the other way. It's very sad.

For more on why there are no long-term care facilities available for people with severe mental illness and what you can do to change it, please read my post, End Discrimination Against the Severely Mentally Ill.

Tall Paul

This personal account will be published in a Psychiatric trade journal in the near future. It is a version of Paul's story that I have been telling for over a year - to anyone that will listen. I sent my "Health Care Reform Letter" to the editor of this journal, in response to an article I found on-line from several years ago about long-term care for the severely mentally ill. They responded back, asking me to contribute to their "Personal Accounts" section - but they wanted more of how Paul's treatment made us, his family, feel. They wanted more of me in it. Then they asked me to keep it to 1600 words! Ack!

Note: I used a few lines from some pieces my sister, Katherine Dering, wrote about Paul. I knew she had written some good stuff and since they wanted to know about his family's feelings, I thought using something that another family member already wrote would be useful. Thank you Katherine! I asked them to include your name as a contributor.
+++++++++++++++++++++++++++++++++++++++++++++++
Tall Paul

Tall Paul
Tall Paul
Tall Paul
He’s my all

A little ditty we used to sing to my brother Paul when we were little…

My twin brother Paul was among the thousands of patients who were released from the New York state hospital system. While the gesture is a noble one, that everyone has a right to live with other members of society, there is a segment of the mentally ill population that should never be expected to be able to live on their own and who need constant supervision. Paul was one of them.

Paul’s first major psychotic episode was at the age of 16. After a three day observation he was admitted to a private hospital, diagnosed with schizophrenia. A year later, my parent’s insurance “maxed” out and they were advised to commit him; it was the only option that would ensure they could financially take care of their nine other children. Paul never left the state hospital system, except for short visits home or day outings, until the hospital closings caught up with him in 1998, 22 years later.

Paul was extremely resistant to any type of drug, behavioral or cognitive therapy. While he mellowed over the years, never a day went by without him talking of something that never happened, like being killed by one of his best friends, making millions as a Kung Fu star in Korea, or having 200 children born from his teeth.

He did have some lucid moments. He could ask after my sons and he loved to show me all of the pictures of his nieces and nephews in his wallet. He knew who everyone was, and could follow along with the happenings of our family members over the years. But his conversations were always interwoven with a medley of delusions. Always.

My family agonized over Paul’s initial commitment. Paul was my twin. How could I be happy when he was in “there” and I was living a so-called normal life? But I “went on” with my life, as I was told. I moved away, met my husband; I even had my own set of twins, which was a blessing and a curse. It was a constant reminder of the twin life I had lost.

Early on, his delusional ranting sometimes ruined holiday gatherings; upsetting more than the children. We loved Paul, but we were relieved to take him back to the hospital at the end of some visits. Visits usually ended in a pool of tears. As much as my parents, my siblings and I suffered from sadness, guilt and loss, we knew Paul could not live at home with us. Paul was very sick. We could not manage his 200 lb frame which still showed signs of the former football player he was.

As time wore on, we realized Paul would never get better. I also realized I did not “do it” to him. My parents didn’t “do it” to him. The drugs (PCP, Acid – anything he could get his hands on) probably triggered it and made it much worse. I tried to forgive myself for sometimes being happy. I cried less often and sent him cards and gifts on his birthday. I talked to him on the phone and visited with him when I was home. I sought help sporadically for my “chronic, low-grade, depression”.

Paul and the other patients displaced from the hospital closings were on only one track – to live independently. He was put into a transitional group home on the hospital grounds, then moved to another transitional group home within an “assisted” living complex, and then finally to his own apartment within the “assisted” living complex. He took cooking and other “life skills” classes.

At first I was overjoyed. He was finally out from behind locked doors and barred windows. I think about it now and marvel at how naive I was to think Paul was still going to be “taken care of”. We eventually learned that the assistance provided required that Paul ask for help, something he lacked the insight to do.

About a year after he started his new, independent, life, my sister Katherine visited and noticed Paul looked skinny. She hadn’t seen him in a few weeks. She eventually learned that his food stamps card didn’t work anymore. She found out he had been knocking on doors, begging for cigarettes and food. Another time, he was picked up by police because he was “menacing” people on the street, yelling at them, claiming they stole his liver. The police took him straight to the hospital.

After the food stamps incident, my sister Katherine met with Paul’s case workers and doctors. They were still talking about moving him to an even less supervised environment. It was mind numbingly absurd. In one breath the doctor acknowledged that Paul was so drug resistant that he would never get better. In the next, the social worker said that Paul was required to ask for help to fill out his food stamps renewal form, not the other way around. Were these people even in the same room with each other? They had no idea Paul had so little food. And now they were telling my sister that Paul would be transitioned to an even less restrictive studio apartment.

Katherine remarked, “Stray dogs are treated more humanely than the mentally ill in this state.” She thought he would die if they went through with it. They didn’t get a chance.

Paul’s condition deteriorated to the point that he was sent back to the state hospital. During this admission, we found out (again after the fact) he had "volunteered" for a drug study program. He was put in a special unit where they could monitor any side effects and took blood everyday to check on how much of the drug remained in his blood stream. He was a human guinea pig!

After he was released from the state hospital – again – he was placed in a 200 hundred bed facility called an adult home. Everyone there seemed mentally ill. They would mill around the halls and outside, smoking, or wandered the streets. There were no planned activities. You couldn’t give my brother anything of value as it would get "lost" or he would give it away, being generous or trading for cigarettes. There were times we had to ask the staff to clean his room because it smelled really bad. There were times when I visited him and other people were sleeping in his roommate’s bed. One of them, a woman, had a habit of wetting the bed. Paul again cycled in and out of the local hospital psych wards and the state hospital.

How could anyone think this life of Paul’s was better than when he was in the state hospital? During his last stay in the state hospital we practically begged them to keep Paul. We were told this was not possible.

During the 10 years after his initial release in 1998, Paul’s physical condition suffered as much as his mental one. He looked old beyond his years. The agony that my siblings and I went through during this period of Paul’s life far exceeded the agony we felt when he was committed. Ironically, we became friends with the new, mellower Paul. We loved the New Paul, just as much or more than we loved the Old Paul, our Tall Paul. While he was still very delusional, he didn’t lash out at us as much and would cooperate in his treatment. However, and this is important, this cannot be mistaken for Paul being able to live with us or his being able to live on his own.

A few years ago, I convinced my husband to move from WI to NY so I could be near Paul after nearly 30 years. I became number one on the list at the adult home to call if anything happened to him. I saw him almost every weekend. I took him bowling and to the movies. He would introduce me as his twin sister. I felt somewhat whole again.

Within six months after my move back to NY, he had two severe bouts of pneumonia resulting in hospitalizations. We found a nursing home that would accept patients like Paul (i.e. mentally ill). The idea was to give him more time to recuperate, without smoking. However, due to Paul’s chronic lung disease, a commonality among the severely mentally ill, the nursing home decided they could keep him permanently.

The nursing home staff had taken a liking to him. His nickname was “The Governor” because he said hello to everyone and shook their hands. They put him on the patch and we thought maybe, he would be OK. Just weeks after we got the good news that he had a new home, he was diagnosed with lung cancer. He passed away nine months later.

I am heartsick when I think about the life Paul lived. I get angry when I think that the last 10 years could have been prevented. I hate myself for buying him cigarettes. I love my siblings even more for coming together as a family during the chemo and radiation treatments. If nothing else, Paul’s purpose in life was to teach us the true meaning of family. It is both humbling and uplifting. My grief is still raw, but I know it will subside. I am not so sure about my anger.

The point of all of this, my telling Paul’s story, is to illustrate what one former patient’s life was like after the state hospital closings. After Paul’s roller-coaster ride of recurring psychotic episodes, trips to the local hospital psych ward, stays back at the state hospital and then back to the adult homes, it is clear to me he would have been much better off if he had stayed in a real hospital setting, or at least in a permanent group home, where he would have been more closely supervised. If we are to reform the health care system, we need to take this into account.

My Elevator Speech

I am taking an on-line grant writing class. One of the assignments is to create an "elevator speech" for the organization for which we are writing. My organization is the yet to be formally established "Paul's Legacy Foundation".

As most of you know, Paul was my twin brother. He passed away on May 1, 2008 from lung cancer. He spent the previous 33 years in psychiatric hospitals (his first 22 years after his diagnosis) and then warehouses (aka adult homes).

The mission of Paul's Legacy Foundation is to educate people about the seriously mentally ill, to foment change within the mental health care system, specifically to repeal the IMD Exclusion, with the end goal of bettering the lives of people like my brother Paul.

Here's my elevator speech:

There is a small segment of the seriously mentally ill population that will never recover. My brother Paul was one of them. They are ill due to no fault of their own. They should receive the care they deserve. Due to the evacuations of the psychiatric hospitals, many are now living on the streets, incarcerated, or are warehoused in adult homes (which was Paul's fate).

The primary reason the state hospitals were evacuated, was due to a provision in the Medicaid laws established in the 1960's, called the IMD Exclusion. It prevented payment for mentally ill patients in long-term care psychiatric hospitals (aka Institutes for Mental Disease or "IMD"), but the Medicaid law would pay for patients in non-psychiatric long-term care facilities. Basically, the law discriminated against the mentally ill.

The states, looking for ways to ease their budgets, saw an out, which was to send these individuals into the community, where they would receive services that would then be paid by Medicaid. Unfortunately, the community services were not, and are still not, adequate.

My goal is to repeal the IMD Exclusion and to ultimately provide humane, long-term care for individuals like my brother.

What do you think?