Star of stage, screen, and skid row

Sounds like Hollywood is poised to make another heartwarming movie about someone with mental illness who overcomes the odds. Jamie Foxx is set to play the part of Nathaniel Anthony Ayers, who "like 1% of the population has schizophrenia, sleeps on the sidewalk on skid row. His misfortune is to have the one disease for which there's no poster child, let alone a national telethon."

That quote comes from Steve Lopez, a columnist for the LA Times who has been chronicling Nathanial's life. He has pulled his observations together into a book, which will be the basis for the movie starring Foxx.

Nathanial's family, according to Lopez, couldn't get him to stay in treatment.

As do so many schizophrenics, [his sister] Ayers-Moore says, her brother would improve with medication but then refuse to take it and slip back into his tortured
world.

On October 23, 2005, Lopez noted:

Nathaniel is too sick to know he's sick, so he resists treatment that might give him a shot at a better life, and I now understand the frustration of hundreds of families that have told me in agonizing detail of similar dilemmas.

Lopez wasn't content to write about Nathanial - he wanted to help him. And to get others to help him. And he did. In fact, the time and energy put in by so many at Lopez' behest to help Nathanial is beyond touching.

Yet the effort seemed to shift from rescue to rehabilitation - if we can only get Nathanial to trust us and choose housing, the message became, we can save him. After a full year of engaging him, the experts assessed that he was "close" to moving into the apartment they had secured, and furnished, for him.

Another year on the streets.

What eventually happened to Nathanial will likely make a moving and interesting film. But it should also make us angry.

It took 30 years of homelessness, a background as a world-class musician, and the rapt attention of a renown LA Times columnist to get Nathanial moving along the path - not to treatment, but to possibly, someday, getting treatment. Even then, the goal was to help Nathaniel finally choose housing as a first step to get back some of what he lost in the last 30 years.

At one point in the real-life drama, Lopez asked the prescient question, "With treatment, who knows what he could be capable of?"

Indeed. It is certain Hollywood will slap a happy ending on this story. Expect to see Nathanial at the premiere and for everyone to feel good about lifting this man back up.

Will that make up for society completely neglecting to help him for three decades?

Or make a difference to the thousands like him who still sit on skid row?

Anosognosia: An Inconvenient Truth?

Mental health advocates who argue that court-ordered treatment is a violation of civil liberties conveniently disregard some scientific facts: severe mental illnesses are diseases of the brain, the very organ that allows us to reason and deliberate; some people with severe mental illnesses are affected to a degree that they are unable to make reasoned treatment decisions for themselves; anosognosia also occurs in some some individuals with strokes, brain tumors, Alzheimer’s disease, and Huntington’s diseases; that this “lack of insight” is a major cause of refusal to take medication; and, that medication can benefit many patients with schizophrenia and bipolar disorder.

Take the Bazelon Center for example. In their blanket opposition to assisted outpatient treatment, they summarily dismiss the science of anosognosia by referring to it as a, “…supposed "lack of insight" on the part of the individual, which is often no more than disagreement with the treating professional…”

There are now more than 100 studies documenting “lack of insight” in individuals with severe mental illnesses. How much longer will treatment opponents ignore the research and continue to make the same uninformed arguments?

Dispelling myths – Strongest support for AOT comes from people who could be saved by it

A commonly propagated myth in the mental health community is that people with severe mental illnesses oppose assisted treatment. In fact, some of the most articulate advocacy on this subject comes from people who have experienced the devastating consequences of untreated mental illness. Advocates like Jonathan Stanley, Valerie Fox, Donnie Buchanan, and Austin Mardon support interventions like assisted outpatient treatment (AOT) because they want to know that if they lose insight into their illness and begin to deteriorate, their families will be able to help them.

Mr. Mardon said it so well in his op-ed in the Edmonton Journal this week:

I live in constant fear of what will happen to me if I become extremely ill again. I am comforted knowing that if I become so ill that I can no longer understand the need for treatment, my wife and family will be able to legally get me the help I need.

Those who are against enforced treatment do not seem to understand that even those who turn their backs on the beneficial and appropriate treatment they could be receiving from their health providers, will receive some type of treatment.

The tragedy is that instead of receiving appropriate treatment from their physicians, they could receive inappropriate treatment at the hands of the criminal justice system; the rough, hopeless treatment of lives lived on the streets; or the finality of treatment at the hands of a mortician.

Waiting in vain – getting tx in Pennsylvania

Liz Spikol, managing editor of Philadelphia Weekly wrote an excellent article addressing the involuntary commitment standard in Pennsylvania. In Philadelphia Weekly and on her blog she writes of the struggle to get treatment for people who lack insight into their illnesses.

"Since I started writing this column eight years ago, I’ve been flooded with requests for help from readers trying to get treatment for sick relatives or friends who are too psychotic and delusional to know they need it. These people are almost always turned away from hospitals because they don’t seem to present a clear and present danger—Pennsylvania’s current standard for involuntary treatment."

"Now when caregivers ask me for help with an urgent situation, I tell them the truth: There’s nothing you can do. You’ll have to wait until it gets so bad, it’s life or death."

Senate Bill 226 was introduces to address this problem. The bill would change the stringent dangerousness criteria currently used in Pennsylvania and allow for greater use of assisted outpatient treatment. In short, SB 226 would help Pennsylvania’s sickest citizens get needed treatment.

In her article, Spikol says it best:

"No one wants to go back to the days when involuntary hospitalization meant months or years of spurious and damaging treatment. "

"But when there are more mentally ill people in prisons than in hospitals, you know there’s a problem that calls for serious measures."

Involuntary detention – He “willingly put others at risk”

A common retort by opponents of civil commitment is that “we don’t lock up people with diseases other than severe mental illnesses.”

But that isn’t true. Take the involuntary detention of a man with treatment-resistant tuberculosis in an Arizona jail since July. Robert Daniels refused to wear a mask and take other measures to prevent spreading his disease to the public.

Drug-resistant TB, or drug-resistant staph infections, or pandemic flu can create the need for involuntary isolation. So why is it more common for people with mental illnesses to be involuntarily detained compared to other illnesses?

"It's very uncommon that someone would both not want to take treatment and will willingly put others at risk," one expert said of Daniels.

And that is likely the rub – the word “willingly.” Unlike most other illnesses, about half of patients with schizophrenia and bipolar disorder suffer from a condition that affects their ability to recognize the risks associated with failing to treat their illnesses. Anosognosia, or lack of insight, impairs the patient’s ability to recognize that they have an illness - therefore it is more likely that they will not accept treatment that can reduce the risks associated with their untreated illness.

Committing someone to restore them to competency – so they can recognize their illness and the consequences of its nontreatment – is a measure that protects not just society, but also the patient. Most cases of people with untreated severe mental illnesses who endanger the public later turn out to be because the person thought they were saving the world from aliens, or escaping a CIA plot, or responding to commands from ethereal voices. They aren’t choosing to put people at risk – their disease leaves them with no choices.

The right to choose?

James DiCioccio, a 43-year-old man who has been described as schizophrenic, is sitting in jail for punching and choking a man to death because he was “tired of the man bothering him.”

DiCioccio had a history of violence, and, on multiple occasions, police had been called to the group home where he lived because of DiCioccio’s violent outbursts.

According to Detective Sgt. John Kelty who is investigating:

“James R. DiCioccio, known as Dusty, had not been taking medications that would have allowed him to function. Caregivers at the facility for mentally ill men are not permitted to force residents to take their medications.”

A city health department nurse who inspects group homes said:

“Residents have a right to refuse medication. It's not desirable because most of the medicines are psychotropics that help with psychological disorders.”

Maybe now that DiCioccio is in jail on a murder charge, he will get the treatment he wasn’t able to ask for, but obviously needed.

She suffocated her parents so they would live...

Harvard educated doctor, Kathleen Hagen, has struggled with bipolar disorder her entire life. Seven years ago she spiraled into psychosis and heard a voice that told her she could transport herself and her parents to a better place by suffocating them.

"I was thinking about Resurrection with a capital 'R,'" said Hagen. "I thought they were going to arise and I was going to hear Mommy in the kitchen making breakfast."

A consumer on compliance

A riveting new blog by Robin Cunningham offers a compelling look at the issue of compliance ...

In all the incidents of non-compliance cited above, both voluntary and involuntary, the consequences were devastating. Within three or four days my symptoms returned with a vengeance, especially thought insertions, hallucinations, paranoia and delusions of grandeur. Within seven to ten days, I lost all insight, i.e., I no longer realized I was ill.

Legal fallacies of antipsychotic drugs

A fascinating paper was profiled yesterday on Dr. Helen's blog.

An excerpt:

The safeguarding of individual liberties is an important function of the courts. Indeed, antipsychotic medications are associated with numerous side effects ... But the implication that such medicines are mind-controlling and have the propensity to sabatoge intentionality of free thinking fundamentally misunderstands the effects that these life-saving medications have for millions of people. More crucially, the notion that antipsychotic drugs impair cognition for people suffering from psychosis is in direct opposition to the wealth of scientific studies that have demonstrated just the opposite: that these medicines improve cognition.

The lead author is Steven K. Erickson. You can read the whole study here: "Legal Fallacies of Antipsychotic Drugs"

Australian researchers on AOT's value

A new study of AOT in Victoria, Australia looked at almost 1,200 individuals over nine years. The results, recently published in the journal Social Work in Health Care, echo other published studies of AOT.

Individuals in the Australian study receiving extended outpatient commitment experienced significant decreases in hospitalization (from an average 56.3 days per year before extended AOT to only 19.6 days per year after) and a third more service utilization than in the period before AOT.

Researchers also found that neither AOT nor community services alone accounted for the reduction in inpatient bed use – in fact, either service alone was actually associated with increased inpatient utilization. Their analysis demonstrated that “it is the combination of community services enabled by outpatient commitment that facilitates the reduction in hospital utilization…” This further shatters the myth that enhanced services alone are enough for this population.

The researchers explain that “outpatient commitment is perhaps best conceived as a delivery mechanism rather than a treatment in and of itself” that serves as a “way of delivering services to a population that cannot or will not accept such services voluntarily.” AOT’s role is “to raise the level of outpatient commitment to that provided to the treatment compliant comparison sample.”

In other words, the goal of AOT is to allow individuals whose illnesses cause them to refuse care the opportunity to access the same services as other individuals with mental illnesses. AOT is simply a means of ensuring that everyone has the same opportunity to recover from their illness.

"You're only God for awhile"

In a state with no AOT, a creative judge finds a way to keep a young man out of jail and on his meds.

Travis Williams said he was embarrassed by his behavior now that he's thinking clearly and he is happy to have medication administered intravenously once a month.

"I'm lucky that no one got killed. I remember being mad but I don't remember why I was mad," he said. "You're only God for a while."

PA: Robert Flor's insight

In the past, Robert Flor refused psychological evaluation and would not argue against getting the death penalty. After a week on new medication, that has all changed.

The Bucks County man who admitted this week to killing a Newtown police officer now says he doesn't want to be put to death and would prefer to spend the rest of his life in prison, contrary to previous testimony in the case, according to his defense team.

The defense says a new medication Robert Flor, 39, formerly of Bedminster, is taking for bipolar disorder, has dramatically changed his thinking and willingness to cooperate with his attorneys, prompting the change of heart.

''What has happened in one week, we have literally moved heaven and earth,'' Bradley Bastedo, one of Flor's three attorneys, said in court Tuesday. Flor, who hadn't been cooperating with his defense team in the weeks leading up to his guilty plea, has also agreed to get a psychological evaluation, something he's refused to do in the past.

''We continue to believe that [Flor's past] refusal to comply to testing was an outgrowth of mental illness,'' said Peter Hall, who along with Bastedo is defending Flor.

"How am I to understand medication is relevant?"

Pam Wagner and her sister, authors of “Divided Minds,” are sought after speakers. In this excerpt of Pam’s speech at a recent NAMI meeting, you can see why.

I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.

She goes on to talk very compellingly about compliance and side effects, as well as lack of insight. In her words …

The right medications can help, though, and when the side effects are tolerable, they make the difference between chronic illness and recovery. I wouldn’t be standing here today without them.

But if, as I believed in the mid-1980s, the CIA and FBI control me through a microchip implanted in my tooth, how do I know pills could resolve that? If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how am I to understand medication is relevant? The solution is obviously to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper?

I asked the dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.”

Read more from the always-gripping blog of Pam Wagner.

"I wonder how my kids are doing ..."

Lashaun Harris (or in some news reports, LaShuan Harris) has pleaded not guilty by reason of insanity in the murder of her three young children. The sad recounting of her current delusions is even sadder because if and when she is restored to competency, she will know the full weight of what she did.

In her videotaped confession to police, Harris described how she struggled with two of her boys as she stripped them and plunged them from Pier 7 in an area where tourists stroll along the waterfront. Her youngest boy laughed, thinking it was a game ....

In January, she said, ''I wonder how my kids are doing, if someone good is looking over them.'' She told one family member, ''T.J. is in school and Josh is walking and talking.'' She said her dead grandmother bathes them and ensures they eat properly.

The insightful writings of Pam Wagner

We often check in with Pam Wagner's thoughtful blog. Pam and her sister co-authored Divided Minds: Twin Sisters and their Journey through Schizophrenia, and she has in the past compellingly weighed her feelings about outpatient commitment.

Pam's latest blog entries are a chilling recounting of her 4-week hospital stay, and the delusions and hallucinations that plagued her.

The voices are my brain, me, telling myself I’m a lazy fat sh--. That I should die, that I should maim and disfigure myself, that I deserve to put cigarettes out on my own face (which I did, several times) and so forth.

Pam's thoughts into insight are prompted by a "reality test" that made her realize things she thought were real were actually not. That test, she writes ...

... consisted of challenging a delusion or hallucination by asking someone a question like “Did you say such and such?” or “Did xyz actually happen?” or “Is xyz doing such and such in the walls?” etc then listening to the answer and trusting that the answer is the truth. Until I learned it, and could do it fully, including the trust part, I had had no idea that I was living in something other than consensual reality. Even though people told me again and again I was paranoid and delusional, I figured they were using such words just to insult me because they didn’t like me, because they had hated me from the minute they met me anyway. But at the instant that that horrendously frightening delusion dissolved in the light of reality, it became clear to me how much time I’d been spending in a wholly fictional world and how often I’d need to use that reality test: in three words -- all the time.

Lack of insight. That was the fundamental difficulty. I didn’t know that I had a problem. The reality test gave me insight, but it took me a four-week hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it. But we all know some who remain unaware of being ill all their
ives. If there were a magic wand I could wave to change this, I would tell you where to find it. I only found insight by using it.

TAC to SCOTUS: Crime, anosognosia, weak laws

The Treatment Advocacy Center filed a “friend of the court” brief filed in the Clark v. Arizona case, that said in part:

[A]nosognosia increases the likelihood that victims of severe mental illness will reject or fail to seek treatment. This problem is exacerbated by antiquated state civil commitment laws that forbid treatment interventions until individuals pose an immediate physical danger to themselves or others. Because untreated severe mental illnesses are closely correlated to an increased risk of violence, anosognosia and these commitment laws operate together to ensure that mental illness will cause some of those it afflicts to engage in criminal behavior.

Some states are reacting to the tragic ramifications of untreated mental illnesses, and consequently anosognosia, by adopting more comprehensive commitment schemes with less restrictive, more flexible standards. New York’s improved law, known as Kendra’s Law, has resulted in dramatic reductions in incarceration, arrests, homelessness and hospitalizations of the severely mentally ill. [1]

Extensive clinical research has found analogous outcomes for reformed commitment laws in numerous states. [2]

TAC respectfully submits that reforms such as these, as opposed to unduly limiting—if not completely obliterating—the insanity defense, are the proper method to balance safety concerns of States with the due process rights of the mentally ill.

The staff and board of directors of TAC thank the attorneys from the Dechert law firm who provided invaluable pro bono services on TAC’s brief:

David A. Kotler
Megan Elizabeth Zavieh
William Gibson, and
Elliot M. Gardner
Princeton, NJ 08543-5218

[1] See N.Y. Mental Hyg. Law § 9.60 (Consol. 2005). Individuals in the first five years of New York’s assisted outpatient treatment (“AOT”) program experienced fewer hospitalizations (77%), episodes of homelessness (74%), arrests (83%), and incarceration (87%), and had improved medication compliance (fifty percent) and participation in substance abuse treatment (65%). Fifty-five percent fewer recipients engaged in suicide attempts or physical harm to themselves. Three out of every four of the program participants reported that Kendra’s Law had helped them regain control of their lives; four out of five said that AOT helped them to get and stay well. See New York State Office of Mental Health, Kendra’s Law: Final Report on the Status of Assisted Outpatient Treatment (2005).

[2] See, e.g., Marvin S. Swartz et al., Can Involuntary Outpatient Commitment Reduce Hospital Recidivism?, 156 Am. J. Psychiatry 1968, 1973 (1999) (hospital admissions reduced by 57% when used for at least six months and combined with routine mental health services); Jeffrey Swanson et al., Involuntary Out-Patient Commitment and Reduction of Violent Behaviour in Persons With Severe Mental Illness, 176 Brit. J. Psychiatry 224 (2000) (assisted outpatient treatment of six months or more combined with routine outpatient services reduced the incidence of violence in half (24% versus 48%)); Jeffrey Swanson et al., Can Involuntary Outpatient Commitment Reduce Arrests Among Persons with Severe Mental Illness?, 28 Crim. Just. & Behav. 156, 182–83 (2001) (same); Virginia A. Hiday et al., Impact of Outpatient Commitment on Victimization of People with Severe Mental Illness, 159 Am. J. Psychiatry 1403 (2002); Gustavo A. Fernandez & Sylvia Nygard, Impact of Involuntary Outpatient Commitment on the Revolving-Door Syndrome in North Carolina, 41 Hosp. and Community Psychiatry 1001, 1003 (1990) (median readmissions decrease from 3.7 to 0.7 per 1,000 days); Virginia A. Hiday & Teresa L. Scheid-Cook, The North Carolina Experience with Outpatient Commitment: A Critical Appraisal, 10 Int’l J. Law & Psychiatry 215, 229 (1987) (over six months, 30% medication refusal versus 60% absent orders); Robert A. Van Putten et al., Involuntary Outpatient Commitment in Arizona: A Retrospective Study, 39 Hosp. & Community Psychiatry 953, 957 (1988) (“almost no patients” without orders voluntarily maintain treatment in mental health system versus 71% who do in group with orders); Guido Zanni & Leslie deVeau, Inpatient Stays Before and After Outpatient Commitment, 37 Hosp. & Community Psychiatry 941, 942 (1986) (hospital readmissions decrease from 1.81 to 0.95 per year).

25 years since Hinkley ...

Today is the 25th anniversary of John Hinckley’s shooting of President Ronald Reagan. This case’s impact on the insanity defense has been phenomenal.

On April 19, the U.S. Supreme Court will hear an insanity defense case for the first time since the Hinckley case led to the change in so many state laws. The case centers around Eric Clark, a young man with schizophrenia. Clark killed a Flagstaff, Arizona, police officer during a traffic stop and was sentenced to 25 years in prison.

As with about 50 percent of those with schizophrenia, Clark lacked insight into his illness - he didn't know he was sick, and in fact thought that Flagstaff was being invaded by aliens.

Needs Treatment … But Gone Missing

Cindy Shannon, 41, is schizophrenic and is on three types of medications. … "I'm just worried about her," Terri Shannon said. "She usually calls. I'm just surprised she hasn't called. I know she doesn't know she's been gone several days. … Terri Shannon said her sister might look unkempt by now and most likely would be talking to herself or she could be panhandling for change or food. … "She's not violent," Terri Shannon said. She worries that people might hurt her sister or that her sister might become a victim of a hit-and-run driver. [San Gabriel Valley Tribune, Jan 12, 2006]

When a family member is missing, time seems to stand still.

We hear too many stories about people with severe mental illnesses who disappear, leaving their family members mired in feelings of panic, worry, helplessness and hopelessness, fear that the police will not find their loved one... and fear that they will find them, after it is too late. Just this month, we’ve seen stories from across the country, like California (they found a missing woman’s clothes, but haven’t yet found her) and Oklahoma (an unhappy ending).

WHY?? In most of these cases, the missing person is unaware that they are sick. They may believe that they are on the run from the CIA or the mafia. This phenomenon — called anosognosia — affects the majority (55 percent) of those not receiving treatment for severe mental illnesses. You cannot convince someone with anosognosia that that they are sick because they fully believe their delusion. In many cases, the only way to get someone with anosognosia into treatment is via a court order.

WHAT CAN I DO?? Because people with anosognosia who are missing are often times constantly on the move, this presents an additional legal challenge to families trying to get their loved one committed — each state has a very specific law in regard to assisted treatment or involuntary commitment. That can make it especially hard on families who are trying to navigate a law they don't know in a state where they don't live.

What can you do if someone you love is missing?

• Read some real-world advice from a family that has been there …
• Contact the Center for Missing Adults
• Connect with others in similar situations (try the great message boards on www.schizophrenia.com or your local chapter of NAMI)

Insanity Defense: A True Story

[Lori] Farmer says she knows ... the voices weren't real. God would never urge her to hurt someone -- least of all her 4-year-old son, who loved Batman and used to run around in a cape that his grandma made from an old skirt. Zane was buried in his pretend cape 10 years ago. Farmer killed him.

When you read news reports of Andrea Yates’ new trial, keep Lori Farmer in mind. Farmer was found not guilty by reason of insanity and is now living in a group home, after years of treatment in a secure psychiatric facility. Her story is a rare look at the insanity defense from the perspective of the person charged with a crime.

And if the emotions of her story don’t get you, think about this.

People who are treated at places such as Western State Hospital are much less likely to commit another crime than those who land in prison, according to Bruce Gage, supervising psychiatrist for the hospital's Center for Forensic Services. He said most people released from prison will break the law within three years, while the recidivism rate for people found insane and treated at a specialized psychiatric program is less than 5 percent.

A mother speaks

There are too many stories about mothers with untreated severe mental illnesses who kill their children – and too few answers to the questions of “why?”.

You rarely hear directly from the mothers themselves, people like Andrea Yates or Lashaun Harris.

An unusual jailhouse interview with Naomi Gaines sheds some light … Gaines threw her 14-month-old twin sons into the river in St. Paul and then jumped in after them. She and one of the babies were rescued.

"I know how I was feeling that day. I know I was not the same Naomi who got up with my kids a million times before and fed them and bathed them and walked them and breast-fed them and cared for them," she says. "I wasn't that same person. So I know that I would never hurt them if I had had my sanity."