What Is NOT In The Health Care Reform Bill For Me

I read an article the other day entitled Healthcare Reform – What’s In It For You Today? This was my reply:

As an advocate for people with severe mental illness (the guy pictured with me in my profile is my twin brother Paul who was committed to a state mental hospital in 1977) this health care reform bill means almost nothing. Since Paul is no longer alive, I am speaking for him and for the hundreds of thousands of former state hospital patients who were forced into a community mental health system that does not work for them.

My main focus is the repeal of the long standing, discriminatory, Medicaid law called the Institutes for Mental Diseases (IMD) Exclusion. This provision of the Medicaid law states that people in “Institutes for Mental Diseases” are not eligible for Medicaid subsidies and almost single handedly is responsible for the homelessness, incarceration and death that people like my brother Paul face today.

The Senate version of the health care reform bill only offers a partial repeal of the IMD Exclusion and only for emergency hospitalization and stabilization. Paul never had a problem accessing emergency hospitalization and stabilization. Medicaid even paid for it. Therefore, this health care reform bill would not have helped him.

People like my brother, who need long-term care, are still facing federally sanctioned discrimination. I have likened this to forcing a person’s grandmother, suffering from Alzheimer’s, to live independently and to manage their own treatment plan. While many people with severe mental illness can manage the community mental health system, people like my brother cannot. He was among many who also have anagnosnia, which is the lack of insight into one’s own illness. This is common among many, but not all, people with schizophrenia and bipolar disorder.

My brother would vehemently state that he was not sick and at the same time talk about the 200 children that came out of where his teeth once were, or about the camera that was implanted in his head (among hundreds of other delusions that would rotate into his conversations). He was just as delusional, full medicated, the day he was released as the day he was committed, yet we were told by his case worker that Paul had to “learn to take care of himself”. Would you do that to your grandmother with Alzheimer’s? Of course not, but that is what Paul and hundreds of thousands of people like Paul, was forced, and failed, to do.

Yes, the state hospitals were/are horrible places, but we shouldn’t just kick out the patients and ask them to fend for themselves, which is essentially what we have done.

Like all illnesses, some people with severe mental illness do not recover. Like all people with a debilitating illness, some people with severe mental illness need long-term care, yet are being denied this care while people with illnesses in other organs of their body are not. This is the very definition of discrimination and the IMD Exclusion is the law through which the federal government allows this discrimination to continue.

You ask what is in this bill for me today. Well, since I am speaking for my brother today, I say nothing.

To which, the author of the article, Rick Ungar, replied:

Flan-reading what you write here leaves me-and I would hope anyone who reads it – speechless. I have to admit that I am not as familiar with this area as I should be. I promise to become more familiar on the subject and to spend some time writing on it. I will also search to see if there is anything of benefit in the bill – even if down the road – that would benefit people who suffered as your brother did.

This seems to be the reaction I get almost every time I tell Paul’s story. I am hoping that the more people learn about this issue, the sooner the IMD Exclusion will be repealed. Please help spread the word. Please contact your members of Congress and urge them to support HR 619, which calls for the complete repeal of the IMD Exclusion.

HR 619 was introduced over a year ago by Representative Eddie Bernice Johnson of Texas, but has pretty much been ignored since it was introduced. It has two co-sponsors and the only action on the bill was to forward it to the House Committee on Energy and Commerce when it was introduced over a year ago.

I am hopeful that journalists like Mr. Ungar want to learn more about the IMD Exclusion and hope he follows through on writing on the subject.  He has a much broader audience than I have. Mr. Unger, and anyone else that wants to learn more about this issue, please go here, here and here to find out more about what the IMD Exclusion is, how it came into being and the damage it has done.

In anticipation of the first question you will be asked when you urge for the repeal of the IMD Exclusion; “how will we pay for this?”, my reply is this:

“We”, the American taxpayers, are already “paying for this”. We are paying for it through increased financial burdens to police departments, local hospital Emergency Departments and Psychiatric Wards, social service agencies (housing is a huge issue), judicial system, jails and prisons (prisons in CA and NY are now the largest psychiatric hospitals in the country, where the mentally ill get inadequate or no treatment and where solitary confinement is the norm).

No analysis has been conducted (why???) to analyze how much this is costing overall, but factoring in the qualify of life that has been lost into it, I say the people affected by the discrimination of the IMD Exclusion, the people who are homeless and incarcerated, are paying a very high price for this social experiment that started over 45 years ago, don’t you? People like my brother Paul, who died too young, have paid the ultimate price – with their lives. This doesn’t even begin to take into account the lives affected through the violence committed against and by people in a psychotic state.

New York State is looking at the renewal of Kendra’s Law, which provides a mechanism to get people with an untreated mental illness into treatment before they become a danger to themselves or others. The law should be made permanent and my favorite mental health advocacy organization, Treatment Advocacy Center is currently working tirelessly towards that goal. However, what good does it do to get people into treatment when they do not have access to all forms of treatment that is made available to other people who don’t happen to have an illness in their brain? The law has helped tremendously to reduce violence, move towards treatment and away from incarceration, but it is not the total answer. This brings me back to the answer I gave to Mr. Unger regarding what the health care reform bill means to me today - speaking for Paul, it means nothing.

The Medicaid Institutes for Mental Diseases (IMD) Exclusion needs to be repealed, period.

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.
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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.