(March 25, 2014) This is advocate Kristina Ragosta’s final week with the Treatment Advocacy Center after six years during which she led the effort to bring assisted outpatient treatment (AOT) to three new states (Maine, New Jersey and Nevada), directly influenced treatment law reforms in numerous other states and expertly managed numerous special projects.

Here are Kristina’s farewell thoughts:

After six exciting, challenging, frustrating and rewarding years as an advocate with the Treatment Advocacy Center, it is with mixed emotions that I am leaving the organization as an employee.

I have had the honor of meeting and working with countless families and individuals whose courage and passion to improve our mental illness treatment laws and to spare others the heartache they have endured is awe inspiring.

I leave, knowing that there is much more work to be done to improve things for people with serious mental illness, and hoping that support for the Treatment Advocacy Center’s work continues to grow while tragedies due to untreated mental illness decline.

While I am sad to be leaving, I am proud to have played a small role in improving treatment for those most in need.

The Treatment Advocacy Center is proud to have been Kristina’s professional home and cherishes her legacy of reform and resources. We say goodbye with the deepest admiration, fondness and best wishes.

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(March 24, 2014) Jerome Murdough, a 56-year-old homeless man with mental illness, reportedly “baked to death” in a jail cell at Rikers Island that was at least 100 degrees last month.

What was Murdough’s offense? He was arrested for trespassing after he was discovered sleeping in the stairwell of a city housing project to escape the cold. Eight days after his arrest he was found dead in his jail cell. According to the autopsy, initial indications suggest extreme dehydration or heat stroke (“Mentally ill inmate 'basically baked to death' in Rikers cell,” Slate, March 19). 

New York has a well-documented history of poor outcomes when people with mental illness encounter the police. Last year a police officer shot and killed 22-year-old Rexford Dasrath after he threatened law enforcement with a steak knife. The police said they repeatedly ordered Dasrath to drop the knife, at which point he lunged at one of the officers. It was later confirmed that Dasrath had a long history of mental health issues (“NY bill seeks police training on mentally ill,” Democrat & Chronicle, March 22).

Tragedies like these are not surprising. Only 5% of New York’s population is served by crisis intervention teams, which consist of police officers who respond to service calls involving mental illness.

But there is some good news from New York.

Last week the state proposed $2 million so that it can establish crisis intervention team training programs to help police officers assess mental illness and de-escalate confrontations with people who appear to be in a psychiatric crisis. The hope is that this training will result in using force less frequently and a better ability to link individuals in crisis with services rather than unnecessarily arresting them.

In a better world, people with untreated severe mental illness would get help before their symptoms resulted in law enforcement involvement. But until then, states that fail to use such uncontroversial tactics as law enforcement crisis intervention teams are failing people like Murdough and Dasrath and their communities.

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(March 21, 2014) The knock on the door I knew would someday come was here. It was a bitter cold January night, about 11:15 pm. Two very kind but somber police officers brought news I already had felt in my heart—that my son was never coming home again. My son Joey had been killed earlier that evening. He was the victim I saw wrapped in a white sheet, laying on the pavement on the evening news.

I tried to prepare for this day, for most of my life. Now that it was here I wanted to scream, “No! Not yet! Not now! I’m not ready. It’s too soon. I just talked with him this afternoon and he seemed fine.” But the truth was, he was a little manic; writing a new essay on his computer, making lists for items he would need to begin a new career path—refurbishing properties—preparing to paint his room, and going out to buy a new wristband for his watch.

Since the mental health professionals wanted him to be emancipated from his family I had looked at a property that a friend had that was for sale, that needed to be refurbished, and one in which Joey might live. Although Joey had some experience refurbishing properties, I honestly didn’t understand how the “professionals” thought this plan was supposed to work. He was 45 years old and had never lived on his own. Nevertheless, Joey said, “Yes,” he would be home when I got there around dinnertime. “Yes,” he said, we would then go look at the property.

This would have been the first property that he could live in while he worked on renovating it. He could become independent, which is what his mental health providers had been pushing him to do.

The only other thing I can remember him saying, that last day of his life, was: “Mom, I am so sorry for all the worry I have given you. It will get better soon. I love you.” I have searched my memory many times trying to remember anything else we might have said to each other during that last exchange. But I always came back to those last words: “I love you” because ultimately, what else matters?

What happened between the time I received his telephone call that afternoon and 6:23 pm. that evening, when he ran into interstate traffic is open to speculation. It is my opinion that he just gave up the fight. Do I believe he committed suicide? No, not consciously. Whatever went on in Joey’s mind was not preplanned. It just happened, on the spur of the moment, like so many other things that had happened in his life. It happened without reasoning of the consequences. You see my son was mentally ill.

I can say that now as casually and as a matter of fact as a parent might say, “My child is diabetic,” or “My child has asthma,” or “My child is class president.” Saying someone is mentally ill is usually said—in jest—when your child, or someone does something incredibly stupid. However, I can tell you there is nothing funny about mental illness. When did I stop thinking that discussing the fact that you have a child with mental illness was not something you talked about in polite conversation? Sadly, not until the day he died.

The reasons most people don’t talk about mental illness are varied and multiple. With me it was because of how my son dealt with his illness. It seemed he often felt ashamed and ostracized, as if no one would accept him as a person worthy of love.

Surely we can do better.

I hope my story will help remove the stigma from those with mental illness, and bring those who suffer from this condition an opportunity to come forward and be allowed the dignity to live a productive life; one that does not include jail or prison, as that is how society seems to control a large percentage of our mentally ill population.

To effect changes to the system that is currently in place, we must start by talking to our loved ones. We must be unafraid to share with the world what it’s like to live with those afflicted with mental illness. Mental illness is not the fault of the person. Mental illness is a biological fault sometimes made worse by environment.

We seem to have a need to blame someone for the condition; especially the afflicted one. Hopefully my story will put the “blame” where it belongs; with man’s inhumanity to mankind. When the answers and solutions are not at our fingertips, experts shrug their shoulders and walk away.

Excuses should no longer be tolerated. I believe this is one of the last “closet doors” we need to open. Mental illness affects almost everyone; most simply do not even realize.

Linda Hutchinson
Resident of Ohio and the mother of Joey, who ended his life on January 16, 2008.

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(March 20, 2014) Conditions for the inmates and staff at New York City’s Rikers Island jail complex have reached noteworthy low points this year, and mental illness has complicated the situation considerably. (“Rikers island struggles with a surge in violence and mental Illness,” New York Times, Mar. 18).

“A jail like Rikers Island has a subculture of violence,” said Dr. James Gillian, an author of a report on conditions in Rikers. “Yet its particularly vulnerable mentally ill prisoners are still often placed in solitary confinement, even juveniles.”

According to daily incident reports from the complex, in the last three months, at least 12 inmates have been victims of slashing or stabbings, most of which have occurred on their faces or necks, since. Correction officers have also endured a variety of other injuries including lacerations, concussions, eardrum punctures and fractures.

This violence has raised alarm for those who oversee the institution, including officials, union leaders and prisoners’ advocates.

Rikers is one of the country’s largest jail complexes. The proportion of inmates diagnosed with mental illnesses has grown from 20 percent to 40 percent in eight years, the New York Correction Department says. And this influx of mentally ill prisoners poses a huge challenge to both the facility and to the city.

“Right now, jails and prisons are grappling with a population they are not prepared to deal with,” said Dr. Bandy X. Lee, a professor of psychiatry at Yale University specializing in violence at jails and prisons. “It is not so much a fault on the part of the correction system,” Lee continued. “They are simply not equipped and have not been able to adjust quickly enough.”

The result of this lack of preparation is that mentally ill prisoners often suffer even more than their peers, being assigned by frustrated and underequipped guards to isolation and sometimes to abusive therapeutic units even when they do receive treatment while incarcerated.

Unfortunately, as Rikers knows, the problem of overrepresentation of the mentally ill among inmates, and the neglect and abuse that often result from ill-equipped facilities and staff, is not new. Not only does this problem call for safeguards within jails and prisons, but also for efforts to divert the mentally ill to treatment rather than to incarceration.

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(March 18, 2014) The Christie administration announced yesterday that it has dedicated an additional $4.5 million to fund assisted outpatient treatment in all 21 counties of New Jersey, taking the life-saving tool statewide (“Chris Christie takes mental health commitment law statewide,” NJ.com, March 18).

Expanding the law will improve New Jersey's ability to provide treatment for people who are so impaired by mental illness they may not even realize they are sick. 

Originally signed by Gov. Jon Corzine in 2009 without any funding attached, the Christie administration then said the law wouldn’t take effect as planned because the state was short on cash.

Even without the funding, five New Jersey counties have implemented the law, which assigns patients to case management, therapy and housing, and in some cases, employment.

In the counties where AOT exists, mental health professionals have praised the law as a way of ensuring care for people who pose a risk to themselves and their communities and also for reducing homelessness, arrests and hospitalizations.  

“Our experience in Essex County is that [AOT] works,” said Robert Davidson, executive director for the Mental Health Association of Essex County. “It’s a very effective tool to help those most impaired by mental illness.”

Like many other states with court-ordered treatment laws on their books, New Jersey’s law grew out of tragedy: the October 2002 murder of seventh-grader Gregory Katsnelson, who was abducted and stabbed while riding his bike near his home. Earlier that day, Gregory’s assailant, Ronald Pituch, used a barbell to fatally bludgeon his mother, who had long pleaded with him to take his medication to treat his paranoid schizophrenia.

Congratulations to Gov. Christie for realizing that New Jersey can’t afford not to fund AOT for the most vulnerable residents.

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(March 14, 2014) Most people have, at some point, encountered someone with a mental illness. Perhaps there is an aunt or cousin with mental illness, or the son or daughter of a coworker. Yet, people in general have limited understanding of the life of someone with serious mental illness. It might help you understand if I explain to you what it is like for me to experience a psychotic episode and then recover from it.  

First of all, when we become psychotic, it seems to us as though we're just fine, and the world has gone cockeyed, or else we may feel that there is a massive conspiracy centered on oneself. We may be completely unaware that something has gone wrong with our thinking. The illness will usually block out this awareness.  

We will become unable to communicate properly with people, and we may feel that everyone is being unreasonable toward us. We do not understand why people are acting strangely to us, and we may get very angry about this, or will at the least be extremely irritated.  

When I was last severely psychotic, which was around this time of year in 1996, I was hostile and nonviolent. I yelled at people, including the person who would later become my wife. She called the police on me because I was acting too belligerent.  

At another point during the same episode, she dropped me off in the Pacheco area, and from there I wandered the streets of Martinez for many hours in 90-degree heat. I believed I had died and gone to Hell, until I finally made it home, which at that time was the Riverhouse Hotel.  

Later during the same episode, I believed my building would be blown up, and I believed it was urgent that I get some distance from there. I walked from downtown Martinez to a church in Pleasant Hill. Coinciding with this, there was an explosion at a nearby refinery in the Martinez area which was visible for miles.  

The rector of the church called my mother and girlfriend, who advised having the police take me to the hospital. (I wasn't a member of the church or anything--I just showed up there at random, and also, I refused to leave.)  

The police had a difficult time with me because I was nonviolently resisting them, and in 1996, tasers had not yet come into use. (The police weren't going to get too rough with me because the church minister was present.)  

When someone is psychotic, they may feel that their life is being threatened, and this can be quite frightening. We may believe that we can read people's minds, or we may believe that our thoughts are being projected into other people's minds. We may realize that something is wrong, and we may feel that someone is doing something to us to make us that way.  

When psychotic, we are aware of the information given to us by our five senses, yet we interpret this information in a bizarre and erroneous manner. We will be preoccupied with the thoughts in our mind, and these thoughts are strange and incorrect.  

If we become excessively psychotic, we may be unable to obtain food, to brush teeth and to bathe. Rent will go unpaid, and we may not even be organized enough to spend money that we already have in our bank account. The instinct of thirst will usually but not always prevent us from being excessively dehydrated, yet we could go days or weeks without food, unless someone is putting food directly in front of us.  

There is such a thing as tactile hallucinations, in which we feel as if bugs are crawling on our skin. We may hear voices when no one is speaking--auditory hallucinations. We might see spots--visual hallucinations.  

We might think we are being attacked by the Devil, and we may believe we are a historic religious figure. We may be unable to contact family even though this might merely require picking up a phone and dialing.  

When finally brought to the hospital, we may feel a great sense of relief that someone is getting us out of a hole we could not get out of by ourselves.  

Once medicated, medication side-effects can create a great deal of suffering, but this is usually less suffering than during fully-blown psychosis. It can take weeks or even months of staying medicated to return to a relatively normal state of mind. Once back to a fairly normal state, we may become aware that we have a long road of recovery ahead.

Jack Bragen
Author of Jack Bragen’s Essays on Mental Illness

(March 13, 2014) The father of Adam Lanza, who killed 28 people, including himself, his mother, school workers and elementary school children in December 2012, broke his silence this past week. Peter Lanza spoke with Andrew Solomon of the New Yorker about his son, the tragedy he committed at Sandy Hook Elementary School and about the aftermath of that gruesome day (“The Reckoning,” March 17).

The interviews with Solomon, which were Peter Lanza’s first about his son, took on the many questions about whether the event could have been prevented or predicted, the need for mental health or gun reform and speculation about Adam’s motive. But, Solomon wrote, “Peter Lanza came to [those] conversations as much to ask questions as to answer them. It’s strange to live in a state of sustained incomprehension about what has become the most important fact about you.”

Perhaps most compelling was the perspective Solomon’s story provided towards the human impact not only on Adam Lanza’s victims, but on those who loved him. “I’m not dealing with it,” Lanza told Solomon. “You can’t mourn for the little boy he once was. You can’t fool yourself.” Lanza also said he was surprised by a victim’s relative saying that they had forgiven Adam, a position he still struggles with. “I didn’t even know how to respond,” he said. In spite of the sorrow he felt about the lives lost at the hands of his son, and about this new reality and visibility, Lanza decided to share his story to help the families of those who Adam killed, and maybe contribute towards preventing another such event.

Although it is unclear whether Adam suffered from psychosis – there is no evidence that he did, Peter said he had suspicions of schizophrenia at times – the Lanzas’ story is unfortunately all too familiar to some families with loved ones who have acted violently on psychotic thoughts with tragic consequences.

The notoriety that emerges from raising someone who has perpetrated such acts is obviously unwelcome, but also masks another tragedy: the failure to find answers about why and how so many lives could be ruined by what seem to be mysterious forces. And these failures occur at the hands of our larger communities, not just the families who struggle to find the right path.

When reflecting on Sandy Hook, we must challenge ourselves to ask: can we find compassion for those who struggled to find answers to the many other questions the Lanzas faced while raising Adam? And can we challenge ourselves to find some compassion for others like Adam Lanza?

“I want people to be afraid of the fact that this could happen to them,” Peter Lanza told Solomon. “It’s real,” he said. “It doesn’t have to be understood to be real.”

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(March 12, 2014) When Matthew Hoff turned 18 he was free to make his own medical decisions, including discontinuing treatment for his bipolar disorder and other mental health problems. His parents tried unsuccessfully to get him back into treatment, but he wasn’t considered dangerous or gravely disabled enough.

"We worked hard to keep him safe. But then he turned 18 and we couldn't keep him safe anymore . . . It’s like watching your kid drown slowly," Matthew's mother, Jennifer Hoff, told the Los Angeles Times (“Kelly Thomas case prompts counties to take fresh look at Laura’s Law,” March 9).

Less than four months after turning 18, Matthew was arrested for the first time, entering a cycle of homelessness, incarceration, hospitalization, release and re-arrest. Matthew’s fourth encounter with the law occurred mere weeks after being released from a residential treatment facility for mentally ill teens; he walked into a bank and demanded $1,000 on a sticky note.

Now he is serving fifteen years in prison, much of which he spends in isolation. Hoff believes that Laura’s Law could have prevented her son’s deterioration by allowing court-ordered outpatient treatment to help him stay compliant with his treatment plan and stop him from cycling between hospitals and jails.

But it has been 12 years since California passed assisted outpatient treatment (AOT) and only Nevada County has fully implemented the law. Advocates and families like the Hoffs are pushing for expansion, saying that the law would reduce the number of people with severe mental illness who are incarcerated or homeless.

"It's hard for me to understand that anybody questions the value of it," Brian Jacobs, whose siblings suffer from schizophrenia, told the Times. "It's a horrible, horrible illness, and to leave people in psychosis on the streets is unconscionable, but we do it all the time."

Last year, California officials clarified that counties can use money from the Mental Health Services Act to fund the law, undercutting an oft-cited reason for not bringing the law to every county.

Now the rest of California needs to follow Nevada County’s example to protect people like Matthew Hoff and countless others like him.

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(March 11, 2014) There are too many parents with gut-wrenching stories like the ones these two anonymous parents are telling.

“I remember my son’s first day of kindergarten like it was yesterday. The angst I felt when dropping him off and watching that timid little boy walk to the front door,” writes the mother of a son with mental illness in a letter author Pete Earley published on his blog (“Frustrated mother describes her psychotic son’s first day in prison”).

“Tears from the realization that my ‘baby’ was growing up and would eventually have to face this harsh world without me," she writes. "Worrying about whether or not he would be treated with kindness by the other children in his morning kindergarten class.”

These are memories that every parent can identify with. But too many parents can also identify with the experience of a son or daughter’s first day behind bars.

“Tuesday was my mentally ill son’s first day in the prison unit he’s been assigned to,” Earley’s letter writer continues. “The intensity of this particular angst, the depth of the sorrow in my tears, and the heart-wrenching worry over how he will be treated by the guards and inmates is unlike anything I’ve ever felt in my life.”

And from another parent in another publication. “My daughter sleeps in jail tonight, not because she is a criminal, but because the voices told her to do something that was,” begins a father’s story in Daily Kos (“My daughter sleeps in jail tonight: How mental health treatment fails America’s youth,” Feb. 19).

“Instinctively, I stop at her bedroom door and look in at the stuffed animals left untouched on her pillowed bedspread. I try to accept the fact that tonight, my precious baby girl will rest her head on a cold and dirty mattress in a jail.”

Parents will continue marking first days like this until America stops incarcerating its young people with severe mental illness and starts giving them timely and effective treatment before they commit crimes.

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(March 10, 2014) Following the Deeds tragedy, Virginia lawmakers appeared eager to enact mental health reform to prevent similar tragedies from happening in the future. But the General Assembly adjourned last week leaving more substantial reforms unaddressed (“Mental-health advocates fear fundamental problems in Virginia have been left to fester,” the Washington Post, March 9).

It can’t be ignored that lawmakers certainly made modest changes to address the circumstances that occurred late last fall when Senator Deeds’ son attacked his father before taking his own life. The legislature voted to give emergency clinicians more time to find a psychiatric bed and passed legislation compelling the state to maintain an online real-time registry of available beds, which went live this week.

The work in Virginia is far from complete. Virginia needs more hospital beds, clarification of its assisted outpatient treatment (AOT) law and broader inpatient criteria so that the state can effectively treat individuals in need before another tragedy. 

Now that the legislative session is over, we hope that the determination to help families like the Deeds’ continues and future tragedies will be prevented with the passage of meaningful reform.

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