Dear Mr. President

My letter to President Obama, which I will mail to him today.  I will enclose the articles I have written so far about Paul, the issues on long-term care for people like Paul, and the Medicaid Institutes for Mental Diseases (IMD) Exclusion.


Dear Mr. President,

I admired your efforts yesterday to try and get some bipartisan discussion on how we can reform the health insurance system so it is affordable to the working class people, and so people can get affordable health care.  During the discussions you stated, “The people who are really left in the cold are working families who make too much for Medicaid and don't have anywhere to go. That's the group that right now is getting the worst deal. They're paying taxes, they're working, but they've got nowhere to go.”  You also stated, “the fact of the matter is, is that very poor people right now have coverage that is superior to what a lot of folks who make a little more money, are working very hard trying to support their families, do not.

Towards the end, you also said something that is similar to what I’ve been saying all along, which was, “And so we can debate whether or not we can afford to help them, but we shouldn't pretend somehow that they don't need help.”

You are absolutely correct in all of these statements, save for one issue, Mental Illness, which seems to be all but abandoned in the health care reform discussions.  The main issue I speak about is long-term care for people who are debilitated by severe mental illness.  They are the ones that continue to be “left out in the cold”, often quite literally; over a third of our homeless population, numbering in the hundreds of thousands, have a severe mental illness. 

Nothing in the health care reform bills that have been laid out before you so far will help people like my brother, Paul, who was pushed out the state hospital system, in which he was committed for over 20 years.  He was pushed into a community mental health system for which he was ill-equipped to handle. Many people who are like Paul don’t even recognize they are ill, which is required when receiving treatment on the “outside”.  We were told repeatedly that Paul needed to learn to live on his own while at the same time doctors were telling us Paul would never recover.  He never had a day without delusional thoughts for over 30 years. How he was expected to learn to live on his own is beyond comprehension. Paul proceeded to cycle in and out of psychotic states, requiring re-hospitalization, almost immediately. Yet we were told there was no going back; virtually no one has access to long-term care anymore, unless you are rich.

Now, we have gone back to criminalizing mental illness.  Prisons now act as de-facto psychiatric hospitals, with "patients" numbering far greater than any facility available to people in the community. Prisons often provide inadequate care – or none at all.  Some prisoners with severe mental illness not only don't get treatment, they are thrown into isolation for months, even years.  Paul was picked up by the police on a number of occasions.  Something could have happened during one of these incidents that could have landed him in jail, but luckily he was taken to the hospital each time. Others are not so lucky; they either hurt someone or are convicted on drug charges as many people with untreated mental illness use drugs to self medicate and have a dual diagnosis of mental illness and drug addiction.  I am thankful beyond compare that this was not Paul's fate, but it could have been, and it is for many, many people like him.

The mental health parity law, enacted in 2008, would not have helped Paul, and neither would the health care reforms that have been discussed to date.  Paul was a Medicaid patient, the same sort of person you say receive "coverage that is superior to what a lot of folks who make a little more money" have.  Obviously, you did not have people with mental illness in mind when you said that, or you are unaware of the situation.  Neither conclusion leaves me with any peace of mind that the treatment of people like Paul will get better any time soon.

There is only one solution to this problem and that is to end the 40-year old discriminatory practice of excluding patients in “Institutes for Mental Diseases” or “IMDs” from Medicaid coverage.  The Medicaid Institutes for Mental Diseases (IMD) Exclusion, enacted as a part of Medicaid at its inception, has provided the states with a financial incentive to deny care, not provide it.  This is, in my opinion, one of our country’s cruelest human rights violations because it was done in the name of civil liberties and during a call for more humane treatment for those “warehoused” in state hospitals.  Where are these former patients now?  They are in prison, homeless, or they languish in adult homes (a practice which the Supreme Court just declared unconstitutional).

We can debate how we can pay for the long-term care that people like my brother Paul need, but as you said, this does not mean they don’t need long-term care. Some people with severe brain disorders recover, some don't, just like any other illness. All I ask is that one criterion be used to discern whether or not someone is in need of long-term care, no matter what the illness is called or in which organ of the body it originates.  Medicaid eligibility should be determined by the individual's ability to pay, not where they are being treated.

I say we are already paying a high price for this social experiment gone bad through the increased burdens on the police, emergency rooms, local hospital psych wards, social service agencies, and our judicial system, not to mention people’s lives.  The states' budgets were balanced on the backs of people like my brother and the communities in which they live.

Paul died to save the state of New York some money, and the IMD Exclusion was responsible for creating the atmosphere in which it was allowed to happen.  His physical health suffered greatly after he was released from the state hospital.  After almost ten years, he was admitted to a nursing home as a Medicaid patient, due to his chronic lung disease.  Yes, nursing homes would accept him for his COPD, but not his mental illness, because if they did, they could be labeled an IMD and loose their Medicaid subsidies for all of their patients.  This is discrimination, pure and simple.  He died a year after he found his final "home".  He was only 48.

Please, repeal the IMD Exclusion as part of the health care reform package.  You have the power, right now, to change the course of treatment for the people, like Paul, who have no voice in this debate.

My Kind of Motivation

One of my daily activities these days is to roam the web, looking for references to mental illness.  If I come across something that illustrates the writers' ignorance of the issues, I try to enlighten them.  I try to be polite and informative.

Today, I ran across an article about a woman who killed her 8-yr old boy who was autistic.  She was labeled a "socialite" in the title, which con-notates a rich woman who has nothing better to do than go to parties.  She had previously claimed the boy had been abused by a cult.  There wasn't a lot of additional information about the murder, but her ex-husband called her a devoted mother and was shocked by the news.

To me, a woman who kills her own 8-yr old son, a boy with disabilities, must have had some psychological issues.  I mean, who in their right mind would do that, right?  Without knowing anything else, I think most people would come to that conclusion.  Think of Andrea Yates.  She was in a state of psychosis when she killed her children.

The first comment I read was, "Socialite = trash with money." I replied with "The woman obviously had psychological issues. She should receive treatment, not ridicule. The whole cult thing was a warning that was ignored."  Someone else replied to my comment with, "while i disregard what the OP said......this woman murdered her son....while she certainly needs treatment, a little ridicule is certainly in line as well".  To which I replied,  

"If you ever had a family member with a severe mental illness who hurt someone - you would not say that. This is certainly not a time for ridicule. There is nothing funny about this. Yes, she murdered her son. A mother who murders her little boy, who had claimed that he had been controlled by a cult, is obviously not well. Just because she was rich does not mean she can't have the same problems as people like my brother, Paul, who had schizophrenia.

He pulled a knife on us once. If he had killed me, would you have ridiculed him too? But then again, it wouldn't have gotten in the news because I am not famous or rich.

Your ignorance is showing."

Another person wrote this comment, , "Give the wench the chair.'  So now the "socialite" is a "wench".

I created my own original comment, which read,

"Posters like C and A come here to show off that they can make cute, sarcastic remarks that does nothing to forward any really discussion on the issue. Without thinking they assume that someone who is rich is obviously trash. Without thinking, someone who is obviously in need of psychiatric help is called a "wench".

She is someone's daughter. She needs treatment, not ridicule.

Yes, she did a horrible, horrible, thing, but someone who can kill their own little boy is obviously not well.  That she is now subject to these childish remarks shows how low this society has sunk."

One person wrote a very thoughtful comment, thanking me for my attempts to enlighten these fools.  The person who wrote the original remark about the socialite being trash replied, "cry me a river". She later went to another article where about someone who beat his wife and replied to one of my comments with, "maybe he was 'mentally ill'." She was trying to egg me into an argument, I think.  I ignored it.

Yup, that's what she wrote.  I am assuming the person is a woman based on her screen name, but it could be a man, I don't know.  In any case, not only is his/her ignorance showing, her utter lack of common decency and empathy is actually a little scary.

But this motivates me more than anything.  I guess I am the kind of person that needs to be pissed off to keep going.  So, I thank her/him for it.  I will save the comments and revisit them.  They will help feed my motivation when it gets low.

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.