De-Criminalizing Mental Illness: Is Prison Downsizing a Solution?

Click here to read this powerful article by:

Ron Honberg, NAMI Director for Policy and Legal Affairs

Serious Disconnects ~ can we learn to speak the same language when it comes to serious mental illnesses?

Serious Disconnects
Kelly Gunning, M.A.
Operations Director, NAMI Lexington

I was baptized in the waters of severe mental illness (SMI) 16 years ago. It wasn’t a baptism in the first person, as I was not actually the person who had the signs and symptoms of the illness and I was not the one who directly suffered each terrifying nuance of the illness. I have suffered serious bouts of depression and had dysthymia for most of my life … there were some very dark days but nothing like what my son was experiencing. With my son’s illness I became submerged in a parallel universe much like a dark, murky underwater world – disoriented and drowning in fear, grief and concern, but only able to watch, helplessly, as my son repeatedly went under. Today, 16 lonnng years later, I still find myself paralyzed for the most part and unable to save my son from what seems to be one of the cruelest of fates, indeed, constant, untreated psychosis.

Don’t misunderstand, it is not as if I have literally just stood by and watched this nightmare unfold, in fact; quite the opposite. First, I tried to learn everything I could about my son’s “condition”, that was the first experience in a series of constant ‘disconnects’, since for the first 8 years no one could agree on what was wrong with my son. Was it drug-induced psychosis? Was it bipolar illness? Was it (gasp!) schizophrenia? (Yes, I actually had one physician tell me he didn’t want to label my son’s “condition” schizophrenia because that was “just too terrible” and “offered so little hope”). It was only after my son’s fourth involuntary hospitalization and by now, years of symptoms, that it was decided that he did have paranoid schizophrenia. Armed with a definitive diagnosis and determined to help my son I encountered what I call the “rest of the nightmare”; ‘disconnect’ number two…the maze of the public mental health system. Unlike most illnesses, mental illness doesn’t walk in the front door of the health care system, nope; it comes in the back door, down the dimly lit alley of the criminal justice system. What other medical illness do you know of that demands the person suffering must arrive in handcuffs, in the back of a policed car? I would think to myself, ‘So (hmmmm), if this is an illness, why is he being treated like a criminal?’ This was and is today the most startling ‘disconnect’ of all. To have a serious, life-threatening illness and to be treated like a criminal simply cannot be our best option in this day and age. I know there are times when very ill individuals must be involuntarily taken into treatment, either for their own safety (usually due to extreme behavior or self neglect), or because their behavior is threatening to others. Today, we know these behaviors are symptoms of a brain disease. We often see these same types of behaviors in Alzheimer’s patients and they don’t come to treatment in handcuffs escorted by the sheriff. Is it because we talk about Alzheimer’s being a disease and schizophrenia as a disorder? People would be outraged if individuals with Alzheimer’s or brain injuries were jailed at the rate of the seriously mentally ill.

I think I have developed some serious insight into what triggers many of the ‘disconnects’ encountered when dealing with the whole spectrum of mental illness. We do not all speak or understand the same language when it comes to mental illness. I recently attended a subcommittee hearing on abolishing the death penalty for persons who are determined to be mentally ill at the time of the crime. This hearing captured a microcosm of the ‘perfect storm of disconnects’. Presenters interspersed their ‘expert’ testimony with words like ‘disorder’ and ‘dysfunction’ and ‘mental illness’ and subcommittee members expressed frustration over what was a ‘disorder’ and how was that different from ‘illness’ and ‘was it the person’s fault?’ ‘or in their control?’ ‘Or what?’ People started quoting the DSM-IV and the various synonymous renderings that we grapple and struggle with to name these myriad human conditions. Wham!! It hits me like a ton of bricks…no wonder there is so much misunderstanding, so many seeds of discord and interruption…nobody can even decide how we are going to talk about “it”, let alone treat “it” or the individuals who have “it”.

After the hearing experience I couldn’t stop thinking about why it is that among all the players in this mental illness conundrum, we can’t seem to come up with a language to use in talking about it. Enter synchronicity; the next week Dr. E. Fuller Torrey publishes an article in the Catalyst newsletter about this very topic. In the article Dr. Torrey talks about why we don’t call people suffering from schizophrenia and bipolar illness “patients”. He talks about the various terminology used such as; “consumer”, “survivor” and most recently, “person with lived experience”. He talks about SAMHSA’s role in determining (and funding) politically correct, universal, person-first terminology.

It seems the current political correctness and funding cycle only wants to acknowledge the end of the mental illness spectrum known as recovery. I support and work for recovery everyday but I also know that within the entire spectrum/continuum of mental illness there are people like my son who lack insight into the fact that they have an illness and refuse the basis of recovery … treatment and support.

Wham!! Here come the bricks again and I realize that until we can all begin to accept and adopt some baseline beliefs, such as; “Schizophrenia, bipolar and depression are brain diseases, i.e. medical conditions - as evidenced by two decades of overwhelming scientific study and proof. These diseases are experienced in different levels of severity and life impact across a spectrum. There are, within this spectrum, cohorts of individuals who lack insight and do not believe they are ill – thus treatment is more difficult and often times impossible, without being forced. Many people engage in and benefit from treatment with medication, adjunct therapies and support. Individuals engaged in wellness, recovery and illness management could recover and thrive, much like people with any other medical condition such as; diabetes and cancer. Until all the stakeholders can agree on some basic information and vocabulary we will always endure a disconnected system because we will not have the common communication interface needed for understanding.

I see this disconnect happening in our NAMI organization locally and nationally. I believe we have experienced some organizational identity crisis among members as a result of it. NAMI initially was formed as a family support, education and advocacy entity which focused on family members in their struggle to understand what was happening to their loved one with serious mental illness. In 1980, National Institute of Mental Health (NIMH) received a billion dollars to study mental illness and The Decade of the Brain research initiative was born. This is where the next big ‘disconnect’ occurs, I believe. Two important things happened that have caused confusion and misunderstandings, which weigh on our ability to understand SMI across systems. Just as NIMH is actually confirming the biological, i.e. medical, basis of brain diseases; new atypical antipsychotic and anti-depressant medications roll out with (perceived) less debilitating side effects. People who had suffered the zombie-like states, tardive dyskinesia and other anti-cholinergic side effects inflicted on them by older anti-depressants and antipsychotic/neuroleptic drugs were now becoming much more functional and engaged in life - thus the recovery movement was born. The fact that many folks were now able to experience relief and improved symptom control opened up the possibility that there could be sustained periods of wellness and illness management was fast becoming the norm. The folks who were now managing their symptoms and doing well were establishing their identity and collectively decided to be called ‘consumers’. With consumer groups, came consumer rights and the call for inclusiveness rang out.

In groups like NAMI consumer councils were started, recovery research and education was coming out and consumer specific groups were emerging and thriving. The thriving consumer movement was and continues to be a huge growth sector for NAMI locally and nationally. Rightfully so, in my opinion, monumental effort and resources were and are poured into program development and opportunities for this ever- growing population of people in recovery. The disconnect comes when this new-found population of ‘person’s in recovery’ do not much care for the notion of being defined as “mental patients” and rail against medical terminology and approaches to manage what would now be labeled, by and large, “disorders” or “lived experiences”. This causes a disconnect because the family education program in NAMI, Family to Family, clearly teaches the medical model and all the parents (myself included) had adopted the ‘no blame,’ medical description of serious mental illness. We were taught to treat our loved ones as if they had cancer or any other life-threatening illness (there is still a disconnect there though because folks with cancer do not exhibit injurious behavior (symptoms) and are not treated like criminals when needing hospitalization or treatment). So, we had a situation where the social climate was at odds with the medical advances being made and it was simultaneously being decided that it was politically incorrect to refer to anyone with a mental illness as a “patient” AND to abandon a medical model of treatment in favor of a recovery model of treatment. It was decided that all treatment needed to be based on person-centered, self-directed, recovery models of care. This was and is all very confusing. What happens to those who are not able to self-direct due to lack of insight? To really be inclusive and fair, I believe we must acknowledge the entire spectrum of illness.

These disconnects occur because, clearly, not everyone fits into the category of being in recovery or even in treatment. Half of the people with schizophrenia have no insight that they have a brain disease, (Torrey 2010) they refuse treatment and because they refuse treatment, they do not experience recovery. This is the story for my son. It is my belief that as long as he refuses treatment he cannot experience recovery. I do know recovery is possible WITH treatment, self care, illness management and support because I see it every day in the peer operated center where I work and I experience it personally in managing my depression.

Dr. Torrey points out in his article that schizophrenia is a disease, clearly established in more than a hundred recent, scientific studies. He points out that most individuals living with schizophrenia and other serious mental illnesses are receiving medical disability benefits such as Supplemental Security Income and Social Security Disability Income. They are receiving these benefits because they have been medically diagnosed with a brain disease. He goes on to point out the recent pressure for parity under insurance laws – parity is based on being treated equally with other diseases, not ‘disorders’ or ‘lived experiences’. (Torrey, 2010) I don’t know many people who would doubt that Torrey is the expert when it comes to unbiased, pure research devoted specifically to serious mental illnesses. Jim Pavle, Executive Director of the Treatment Advocacy Center, writes in this same newsletter, “Schizophrenia and bipolar illness are symptoms of brain disease just as heart attack is a symptom of heart disease”.

It is no wonder we cannot come to agreement on how to create a system to best treat and accommodate people with serious mental illness, let alone keep them out of the criminal justice system. Is it an illness? Is it a disorder? Is it an illness with behavioral implications? Is it curable? Manageable? Is it in a person’s control? What about the seriously ill with no insight? How can some folks experience recovery and some cannot? To create an effective system we have to be able to communicate across systems. To this day, we can’t even seem to come up with basic agreement on the existence of a spectrum of illness or to develop an inclusive terminology within the mental health community, alone. How will we create a universal understanding of the basic facts when we can’t even come to agreement on what mental illness is and what it isn’t or what to call people who have it? We seem more immersed in being politically correct than we are in deciding we need a baseline understanding of serious mental illness and an agreeable language we can use across systems to communicate about it.

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To read Dr. E. Fuller Torrey's article in the Treatment Advocacy Center's Fall newsletter click here. Also read page 6 for TAC's views on mental health laws in Kentucky:
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Psychiatry vs. Antipsychiatry: Call to action

Jaffe, (Advocate for seriously mentally ill) reports in the Huffington Post that brain disorders need a new advocacy group! Is funding going in the wrong place?

Prison is no place for people with mental illness - McClatchy Network - Kentucky.com

If, as Dostoevsky wrote, "The degree of civilization in a society can be judged by entering its prisons," then we have a long way to go.

Prison is no place for people with mental illness - McClatchy Network - Kentucky.com

Prison and poverty an endless loop - Editorial - Kentucky.com

How long can legislature ignore need for change?
Click on this link to read the story in its entirely.

I wrote a letter to the Lexington Herald-Leader editor on November 28, but it was not published in the opinion section. My rebuttal was only 250 words, this is the long version.


Pay Now or Pay Later Kentucky: by GG Burns

Thanks for exposing the misuse of Kentucky state funds. However, your failure to mention one important reason Kentucky has the fastest growing prison population in the United States is frankly disingenuous! Why are Kentucky's prisons growing faster than all other states, yet it's crime rate falls below the rest of the country? Why, because our country's jails and prisons have become the defacto mental facilities!

In May 2010, Treatment Advocacy Center in Arlington, VA, (a national nonprofit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental illness) and the National Sheriffs' Association released a 50-state report, revealing that people with severe mental illness, (which are biological brain diseases) are three times more likely to be in correctional institutions than psychiatric hospitals.

According to a Treatment Advocacy Report in June 2005, there were over 30,000 Kentuckians in local and state prisons. 4,805 of them suffered with serious mental illness, (16%). One year prior to this report in 2004, the number of patients in psychiatric or general hospitals in Kentucky was only 1,638.

In 2006 and again in 2009, Kentucky’s mental health care system received an F grade from the National Alliance on Mental Illness, (NAMI). NAMI is a national, 30-year old grassroots organization dedicated to improving the lives of individuals and families affected by mental illness. Again, Kentucky's funding is pouring into the “reactive” pay-later department called corrections. Kentucky's department of Health and Family services have been flat funded for years while Kentucky's prisons grow like wildfire. When in fact, the lack of sufficient mental health services sets these individuals with serious illnesses up to fail! It takes years to obtain the smallest amounts of services, small wonder so many self-medicate with illegal substances.

On October 19, 2010, NAMI published: "Election 2010: People with Mental Illness Don't Belong Behind Bars” ... Are Candidates Addressing the Facts Report". NAMI’s report charged that when states cut mental health services, costs often are shifted to law enforcement and corrections systems, with almost 25 percent of inmates in prisons and 20 percent of youth in the juvenile justice system living with serious mental illnesses.

Facts:

• About two million people with serious mental illness are booked into local jails each year.
• Seventy percent of youth in the juvenile justice system also experience mental health disorders.
• In prisons, almost 25 percent of inmates live with serious mental illness, but their conditions are often under-treated or not treated at all. Harsh conditions, including isolation and noise, can "push them over the edge" into acute psychosis.
• Fifty percent of people with mental illness who have previously been in prison are rearrested and returned to prison not because they have committed new offenses, but because they are unable to comply with conditions of probation or parole often because of mental illness.
• In prison, people with mental illness often lose access to Medicare, Medicaid, and Social Security benefits. Even when benefits can be restored upon release, reapplying for can be time-consuming and complex. Without case management and community assistance, individuals with mental illness are at risk of requiring costly emergency medical services or ending up back in prison.

Ironically, Kentucky's state budget cuts occur during a time of economic crisis when mental heath services are needed now more urgently than ever. This is an inhumane vicious cycle, called the "revolving door" which will continue to drain the Kentucky state budget.

In historical perspective, we have returned to the early nineteenth century, when people with "brain diseases" filled our jails and prisons. At that time, a reform movement, sparked by Dorothea Dix, led to a more humane treatment. For over a hundred years, these individuals were treated in hospitals. We have now returned to the conditions of the 1840s by putting large numbers of individuals with a serious illness back into our jails and prisons.

Thank you Governor Steve Beshear and Justice Secretary J. Michael Brown for addressing this prison & budget crises. It is time to "change" mental health laws in Kentucky. MORE treatment, LESS JAILS!

GG Burns, Mom, Artist and Mental Health Advocate
Change Mental Health Laws in Kentucky
changementalhealthlawsinky@gmail.com

Brain Disorder vs. Heart Disorder

"Schizophrenia and bipolar disorder are symptoms of brain disease just as heart attack is a symptom of heart disease, and those who suffer from these illnesses deserve medical care and ongoing treatment as immediate and effective as I received."

Click here to read the entire story:
By Jim Pavle, Executive Director of the Treatment Advocacy Center

One Mother's Story ~ the "ultimate AOT story" of one mother’s struggle to get her child help!

What would you do if your child needed medical help and year after year nothing ever changed? This is the "ultimate story" of one mother’s struggle to get her child help! This story illustrates why Kentucky needs its Mental Health Law revised.

I want to personally thank this mother for sharing her heartbreaking story – and for her courage!

I invite you to imagine how much money could have been saved if Tim had been receiving assisted outpatient treatment (AOT), these past 35 years? Imagine your son being transported to the hospital 32 times in handcuffs, if he had re-occurring heart disease instead of a "brain" disease?

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One Mother's Story

by: Faye Morton

November 16, 2010

In June of 1975, I was 38, a working mother and wife. Living in Kentucky, my husband and I were busy raising our three children. Our oldest, a son, was 20 and serving in the Army. Tim, our middle child, was nearly 18, had just graduated from high school and planned to attend the local community college in the fall to study architectural drafting. Our youngest, a daughter, had just finished 7^th grade. I was energetic and had a full client list in my own hair salon, a home-based business. My husband was also self-employed and owned a local barber shop.

Tim had moved into an apartment with a few of the neighbor boys that he had been friends with throughout his childhood. They had spent summers riding bikes, building forts and scouting together as children and as teenagers, gathered at each other’s homes playing cards, table tennis and basketball. Tim was above average in height, being 6’-3’’, and slim built. A nice looking young man, Tim had a sense of humor that reflected his sensitivity and respect of others.

Tim called late one night and asked us to come get him, saying that he was afraid and in trouble; it was unexpected and alarming. After bringing Tim home, the three of us sat at the kitchen table and talked into the early hours of the next day.

Tim was admitted to the hospital the next morning, for 6 weeks, followed shortly afterwards by another hospitalization of 4 weeks. He was given several prescriptions to alleviate his symptoms of paranoia and the voices he heard. He was released with instructions to attend school part time, and work part time, to keep active physically and take his medication. He was to see a therapist once a week.

Never having any exposure to brain disease and the effects of psychosis, my husband and I had to absorb many new concepts and develop new expectations for success for Tim. We learned early that the doctors were convinced medicine would correct the damage to his brain and prevent it in the future.

Since Tim did not think he had a disease that needed treatment, he rarely took his medications. He was able to communicate and get a job, but he could not hold one for long - his paranoia and the voices he heard would interfere. He could keep his behavior together for short periods of time, making it appear that he did not have any symptoms. He tried to live at home, but that did not work because of the conflicts that would come from his paranoia and delusions.

By the end of 1996, at age 39, Tim had been living with paranoid schizophrenia, basically untreated, for 21 years. He had never attended college or held a job for any length of time. I had reached the age of 60 and still worked full time; my husband and I had become grandparents (our daughter’s children) and we enjoyed time spent with our grandchildren. Our oldest son had been diagnosed with cerebral palsy and lived in a local boarding house for veterans. He also had a brain disease, showing symptoms of mania and impulsive/compulsive behavior with some delusional thoughts. But unlike Tim  he recognized the symptoms as a disease, and was willing to take medication.

Tim had been hospitalized multiple times, and no longer would take medicine unless he was in the hospital. He would accept treatment while in the hospital, because he was told that if he took the medicine, he would be released. Tim did not connect the reduction of his symptoms with compliance with treatment. He still was not aware that he had a disease. Tim spent a great deal of time walking the streets. He was a familiar sight on the downtown sidewalks, his long legs making short work of the city blocks. He had developed an addiction to cigarettes, and a taste for soft drinks. Tim did not drink alcohol, smoke pot or misuse any type of drug. He was very tan and slim and looked healthy and fit. However, a short conversation would dispel that notion because his delusions, now quite fixed, would enter into his speech quickly, and his thinness was not because of care for his diet, but because he ate very little due to his paranoia, and would not keep food in his apartment.

When not in the hospital, Tim was offered treatment at the local outpatient facility, but had to find his way there, on the appointed day and time. He would go to the office, but most of the time would not accept treatment. Many caring social workers, psychologists and psychiatrists tried to help Tim, but they were limited by what they were allowed to do by the mental health laws in Kentucky.

During this time, an administrative judge explained to me that he could clearly see that Tim was not stable enough to live unassisted. However, he had no choice but to discharge him from the hospital because the doctor had indicated that he was not a threat to himself or others and the law would not allow the judge to keep him hospitalized against his will. By this time he had been hospitalized by court order eleven times.

Now, in 2010, I am 74, retired and living with my husband in the same house we’ve lived in for the majority of our married life. Our oldest son, age 55, is now living in a veteran’s long-term care facility, his cerebral palsy having progressed to where he is confined to a wheelchair. We visit him weekly, laundering his clothes for him and staying informed of his treatment plan. I’ve always been struck by the fact that our oldest son recognized his symptoms as a disease, and was willing to take medication. Our grandchildren are in college and keep in touch through Facebook.

Tim, now 53, has been in a new program of mobile outreach services that began in 2007. His assigned social worker visits him at his apartment and helps him with his errands to keep him living independently. Up until this time, I had provided his safety net to make sure he had some food, clothes and shoes. Years ago he was homeless and walked/hitchhiked to Buffalo, New York during a harsh winter storm. Since then, I have worked to ensure that Jim would not be homeless again, helping him obtain assistance for housing and food. Many times, due to his paranoia and voices, he would be dropped from programs and I would follow up to get him reinstated, working through red tape and a bureaucracy that allowed the most vulnerable of our citizens to be treated as though they were a subclass and worthless.

The mobile outreach program helps to ease the burden of caring for Tim, but still has not changed the treatment he receives for the disease he has lived with for 35 years. Although he has been hospitalized by court order through mental health warrant or petition (MIW) 32 times, he has never received treatment for any extended period of time. The last time Tim was hospitalized and released I noticed that he was not any less psychotic and it shortly became apparent that he had refused the recommended treatment while in the hospital. Although Tim has never been violent or arrested for any crime, of the 32 times he was picked up by a court order to be taken to the hospital, only the last time was he allowed to ride in the officer’s car without being handcuffed.

This past summer Tim was assaulted by a gang of youths and urged by the police to press charges; Tim was concerned that he would not be a credible witness because of his many “arrests”. He mistakenly believes that he has a criminal record because he has been handcuffed and taken to the hospital on so many occasions.

After 35 years of psychosis, Tim’s brain has been damaged to the point that he cannot mask his illness, so he is ostracized and victimized in his community. If Tim could have Assisted Outpatient Treatment, ensuring a therapeutic time of treatment on the appropriate medications, it could be possible to reverse some of the damage that has occurred to his brain, and he could benefit by improved brain function. The years of malnourishment and neglect are taking their toll as he is rapidly losing weight; his jeans held up by a belt fastened in the tightest notch, but still hanging on him; his teeth broken off and decayed, his mouth ravaged by too many cigarettes and sodas. He no longer can walk the miles he used to. If he does try, his breathing is labored, and racked with coughing.

The way our laws are written in Kentucky, legally, Tim can continue in this state of decline until he dies. The law says he can refuse treatment, so we have to stand by and watch him die by starvation and self neglect.

Tim still does not know that he has an illness, and he does not understand the consequences of refusing treatment. With the current legal system, how many other mothers of children diagnosed today, will spend the next 35 years of their lives watching while their loved one slowly dies?

Please work with me to Change Mental Health Laws in Kentucky!

Click here:
to view Faye's updated story about her son called: 'Personally speaking' ... published in 2012
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