Power of the pen

A stroke of the pen and readers of Iowa’s Rapid City Journal get an education about the plight of the untreated mentally ill. In her letter to the editor, Sandra Babka explains to her fellow citizens:

“In this country the mentally ill are given the right to refuse treatment. The problem is mental illness damages the part of the brain needed to make such an important and rational decision.”

She says “It bothers me that there doesn't seem to be much speaking out for these people.” So she did something about it. She wrote to her local paper. That’s something we all can and should do.

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.

Leave her alone: She’s doing God’s will

She has covered her car, her garage, and her house with graffiti outlining conspiracy theories – her roof includes writing in 10-foot high letters.

"A lot of people use their mind to control others," reads part of one message. "Less people more $ ur next. Jehova A chose me as his servant. Big walls, cameras on main roads," it continues.

Interspersed with thoughts on worldwide conspiracies are scraps of a personal narrative: "They took my baby ... Cops came to house ... He came from Mexico I slap him and run away ... Help." The woman who lives in this one-story San Mateo home, whom we will call Nina, believes that human brains are written in computer code. They can be reprogrammed through the signals in TVs and cell phones by a group of ruthless elites ...

Nina, 46, wasn't always like this. Her son, Walt, remembers a smart, industrious single mother who moved here from Nicaragua in 1987 and, by working two jobs, saved enough money to buy and rent out four homes, two in San Mateo, one in San Bruno and one in Belmont.

Because Nina is not a danger, the state will not intervene to help her. “She refuses to undergo psychiatric treatment because she thinks she is doing God's will by exposing the conspiracies she has identified,” notes the article.

Nina is a poster child for the radical movement that believes everyone is capable of making rational choices. Do those who oppose AOT realize that the inability to help Nina is a product of their stand against earlier intervention and required treatment?

"I only sought to harm myself"

Each year about 5,000 people with bipolar disorder or schizophrenia take their own lives.

People with Sean Craft's illness, bipolar disorder, are almost fifteen times more likely to die at their own hands.

In one night, Craft attempted to end his own life four times and in four different ways. Like Tara Cole, he had long failed to take his medication.

"They should be elsewhere, getting the help they need."

Those words come from Richmond Sheriff C.T. Woody, discussing the plight of the severely mentally ill in Virginia’s jails.

Virginia’s treatment laws haven’t kept pace with the science of treating severe mental illness or the realities of the system of care in place in the state. As a consequence, the mental health system has failed many of the most severely mentally ill.

One major flaw of Virginia’s system is an outdated AOT law. Without effective AOT provisions, providers have no means to ensure consistent care in the community for the most severely ill. As Sheriff Woody explains, “they frequently get treatment, take their meds for a while, get out and then reoffend.”

Virginia can and should do better.

Posted by John Snook - email John with comments

There is hope

Congratulations to Rae Belle and Roger Gambs on being honored by NAMI California this weekend for their endless advocacy on behalf of the most severely mentally ill. Perhaps their greatest accomplishment was saving their own son’s life.

“The Gambses watched Rodger use street drugs, become homeless, get arrested, go to jail and face four years in prison before finally, in 1999, he was ordered by the court to seek treatment. Rodger Gambs recovered successfully and now lives on his own in San Luis Obispo.” [UPDATE: Read a stunning editorial tribute to the Gambs' in the August 25, 2006 San Luis Obispo Tribune ...]

There are so many tragic stories that we sometimes forget to celebrate the successes and honor the families who refuse to give up, persevering until they save their loved ones. (We especially thank those willing to share their positive experiences and success stories to help tear down the barriers for others.)

Jodey Lacey helped save her son Nicholas when she began to see signs of mental illness after he left for college. She reminds us, as teens head off to college, how important it is to recognize the symptoms of mental illnesses. Nicholas explains the role of medication in his recovery.

"Medications have helped control my symptoms of schizophrenia without negatively affecting my ability to do art work and enjoy life. Living with schizophrenia isn't easy. As a young person, I had to learn the hard way that I couldn't run away from my problems. It took many years before I realized that I needed to take my medication on a daily basis."

Jared Harvey has schizophrenia and is featured in the documentary "How Do You Eat an Elephant?" which explores the barriers mentally ill people face in integrating with society.
Jared gives others hope:

"Most of the time it's OK. As long as I take my medication, I can tell the difference between the hallucinations and what's real. As long as I keep myself moving, go to school, the easier it is to overcome the depression and the psychotic symptoms. And you learn to live with it."

Mental health courts and mental health "advocates"

Mental health courts (highlighted this week in the Wall Street Journal and on NPR’s All Things Considered) have been popping up with more and more frequency around the country as the nation struggles to find ways to minimize the number of people with mental illnesses who land in jails and prisons. They are designed to get treatment for those who might otherwise land behind bars, and possibly help them regain their lives. The emerging research and anecdotal evidence to date is that they work exceptionally well for certain people.

And yet.

“If that’s the way you access services for individuals,” said a Bazelon Center spokesperson on NPR, “you are going to encourage arrest.”

Hello? This is already happening in communities without mental health courts. At TAC we often hear from families who are told by mental health professionals that the only way to get help is to have their loved one arrested. This is a practice that started long before mental health courts were conceived.

Bazelon’s website says “court-based diversion … is not a panacea.” Well of course not! It’s time to come down from the ivory tower and face reality.

What is needed is a broad spectrum of options that can be tailored to individual needs and address real problems. Does Bazelon mean to wait for perfect mental health systems to materialize before helping real people who are currently suffering? Realistic reform targets real improvements, and mental health advocates should get on board and stop trying to marginalize tools like mental health courts and AOT – proven in study after study to make dramatic changes in quality of life for those suffering.

Bazelon’s knee-jerk rhetoric does suggest a more subtle and helpful message. There is no panacea. It would be a mistake to think that mental health courts are the answer to all of our problems. In fact, it might cause more people to turn to the criminal justice system for treatment. But, the reality is that too many people are there already because the mental health system is failing them.

What is also needed is a focus on shifting the responsibility for caring for the most difficult patients back to the mental health system. One proven means of doing so is assisted outpatient treatment. It is not a panacea either. But, the Wall Street Journal article demonstrates why it is so important. Harry Rivera, who did so well for five years under the criminal court supervision, was back in jail only six weeks after he was returned to the mental health system. Assisted outpatient treatment can do what the mental health court did for Mr. Rivera - before he ends up back in jail.

Perhaps there is another benefit to mental health courts – they can teach the mental health system how to help the most severely mentally ill.

California bill passes with overwhelming majority

An extension of California's Laura's Law has now passed the full Senate 30-4, after passing the Assembly 65-5 earlier this summer. Follow the action via the California Treatment Advocacy Coalition's website at www.lauraslaw.net.

Living ... and dying ... on the street

Tara Cole wouldn't stay on her medications because she didn't think she needed them. "Her illness just wouldn't allow her to make good choices," her mother Pearl Cole said.

Tara was homeless, despite her family's desire to help her. Lost to her illness, then lost to violence on the streets.

Tara's case is horrible and far too common. And it reminds us that for people with untreated mental illnesses, a group that makes up conservatively about a third of the total homeless population, homelessness is more than not having a home. Tara's family were there for her, with shelter and clothing and food, and she refused because she was so lost to mental illness.

Sad day in New Mexico

While the Albuquerque City Council continues to weigh the option of a citywide Kendra's Law ordinance, Albuquerque's two major newspapers call them on the delay in strongly worded editorials.

The editorial in the Albuquerque Tribune notes somberly that August 18 "is a day to reflect on the horrific costs of mental illnesses ignored."

The Albuquerque Journal's editorial ("City missed first step in helping mentally ill") blasts the Council's delay in acting and clarifies some misconceptions:

Chávez's proposal balances public safety with protecting civil liberties. There is no picking up the odd, the quirky or the angry on somebody's whim. A relative, social worker or police officer would have to petition the court, and a judge would have to rule a person needed mandatory care and approve an enforceable treatment program, be it taking medication or having a supervised living arrangement.

Relying on the criticism that there aren't enough services for the mentally ill is a delaying tactic that creates a dangerous circle— there aren't enough services so there isn't any treatment, there isn't any treatment because there aren't enough services. Kendra's Law would target only the most extreme and dangerous cases of mentally ill residents who need help.

Don't trust the experts

This story about an Oregon mother’s struggle to get help for her mentally son who has a history of psychiatric hospitalizations and threatening behavior is hardly unique. But it is particularly illustrative of the need for better education about what state civil commitment laws allow in states that have good ones.

The article claims that “[t]he problem, most experts agree, is that there are few options between commitment and letting people loose with no safety net whatsoever.”

The “experts” were wrong.

In Oregon, assisted outpatient treatment is an option that possibly could be used for this mother’s son if he has had, for example two hospitalizations in the previous three years, symptoms/behavior substantially similar to those that led to the previous hospitalizations, and will continue to physically or mentally deteriorate.

The take-home lesson?

Don't trust the experts. Learn what your state’s civil commitment law allows. If it is good like Oregon’s – use it. If not, change it.

Greystone Hospital Trustees Call for Reform

The board of trustees of the Greystone psychiatric hospital voted unanimously to support outpatient commitment legislation for New Jersey. In a letter to state Human Services Commissioner James Davy, the board wrote, “If the civil involuntary outpatient commitment process is successful it may benefit both consumers and state psychiatric hospitals by early intervention preventing involuntary inpatient commitments.”

Interested in the effort to reform New Jersey’s outdated mental health system? Get more information here.

Plagued by the memories

In Tennessee on Monday, Sherry Sims drowned her 4-year-old daughter. Sims' mother said to reporters: "My daughter is a good mother. She takes real good care of her children. She loves her children. I know if she was still taking her medicine [for schizophrenia], nothing like this would've ever happened."

A news story from New York this week reports that Christine Wilhelm, like Andrea Yates, is "plagued by the memories." Wilhelm also drowned her 4-year-old child, and attempted to drown his brother. She is sentenced to spend the rest of her life in prison.

Will Sims and Wilhelm have more of a chance to get treatment instead of punishment considering the recent Andrea Yates verdict? Possibly. But their children suffered the same fate. And their mothers, once brought back to reality, must live with something unfathomable.

It is the mental health "system" that is stigmatized, and rightfully so

Reading through newspaper clips today sparked an epiphany. It is not the mentally ill that are stigmatized by the public as much as it is the mental health “system” that is responsible for their care.

Another revelation is that the mental health system’s apparent impotency is responsible for the virtual extinction of successful “not guilty by reason of insanity” (NGRI) pleas. In Canada, one observer lamented the “crazy system” that is responsible for 2 people found NRGI there. The writer gives the impression that he is not so much concerned that “[t]he system is willing to take a chance that the offender, with the right medication and therapy, can be released into the community without re-offending.” What he really found scary was “What if he goes off his meds?”

Such concerns are understandable considering a story from Florida in which a woman who was found NGRI for killing her parents was released after 17 years in a state psychiatric hospital. (By the way, so much for the theory that NGRI’s have short hospital stays). She was released on condition that she take her medication and be monitored by a Jacksonville mental health contractor. But the contractor apparently did nothing to ensure her success. In fact, they never even reported any problems to the court despite the fact that she stopped taking her medication, stopped going to her day program, and disappeared for a month before airport officers in Washington noticed her behaving bizarrely and took her for a psychiatric evaluation.

There are many mental health programs and providers that are very competent and committed to protecting and improving quality of life for their patients. They should be furious with their incompetent colleagues that stigmatize the whole system. And the system’s clients, the mentally ill, should be even more appalled by the injustice and stigma that has been wrought upon them under the guise of “protecting their rights.”

Homelessness and untreated mental illness

Homelessness is one of the most visible consequences of our failure to provide timely and humane treatment to people with severe mental illnesses. Life in shelters or on the streets can be difficult for any person, but those who are homeless with untreated mental illness are at even greater risk for death, rape, and victimization.

Wilmington, North Carolina, is just one of many cities this year to witness a brutal assault or murder on a homeless citizen with severe mental illness (see Preventable Tragedies to search for more). While two men are charged with murdering Joe Bradshaw, the local paper interviewed others about life on the streets:

Stacey Alston sees the way people look at him and knows what they're probably thinking. Disdain for the homeless is not a new attitude, and certainly not one confined to a narrow segment of society. But Alston and others eating lunch Monday at the Good Shepherd House shelter on Martin Street still cannot understand what would motivate a person to beat someone so severely that he later died.

Virginia finally heading toward a change?

The Virginia Senate Health & Education Committee recently held a subcommittee hearing to address the much publicized problems surrounding their state’s treatment laws.

The hearing centered around two bills, SB 18 and SB 309, which would reform Virginia’s AOT standard and move away from requiring "imminent dangerousness” before someone can be helped.

Advocates from all across the state traveled to Richmond to voice their support for updating Virginia’s antiquated treatment system. TAC commends the Virginia Senate for taking on this important task, and the advocates whose powerful testimony showed the legislature the vital need for mental health reform.

Using the internet to save lives

Are you searching for a person with mental illness who has gone missing? Do you know someone else that is? USA Today reported on how the Internet can be a helpful tool to find people. There are a number of social networking tools and websites that might be helpful. For example:

Tina Gorman of Webster, Fla., has been searching for 3½ years for her missing son, John Townsend, 31, who has bipolar disorder. She posts messages on the Internet in hopes someone with information will contact her. She also included a link on her work website to her son's profile at the National Center for Missing Adults.

We hope Tina Gorman's son, and all the other missing family members who are out there, will be found unharmed.

Atypicals vs. typicals

The aim of a recent study of acute response to antipsychotic treatment in first episode non-affective psychosis was to help “clinicians to identify those patients with a decrease likelihood of responding to routine pharmacological approaches is meant as a first step to optimize therapeutic effort to benefit individuals in this vulnerable group.” The researchers found that “patients with an early age of onset of schizophrenia, a poor premorbid adolescent functioning, and with a lower severity of psychopathology at intake seem to have a decrease likelihood of responding to antipsychotic treatment.”

With respect to type of medication as a predictor of response, the researchers hypothesized that “likelihood of response would be different among the groups of antipsychotic treatment.” Similar to the CATIE study, the researchers did not find a significant difference between typical (haldol) and atypical (risperidone or olanzapine) antipsychotic treatment and clinical improvement, at least in the early weeks of treatment.

The evidence is mounting that the knee-jerk assumption that atypicals should be the first line medication for treatment of psychoses is diminishing. Thanks to the Pharma funded medication algorithms, the switch has largely been made to atypicals in the public mental health system.

But, it has been very costly. For example, the Medicaid expenditures for antipsychotics increased 160% between 1995 and 1998 when the total number of prescriptions only increased 20%. That is because the proportion of atypical prescriptions grew from 17.5% in 1995 to 51% 3 years later in 1998. The cost grew as well, from $487 million in 1995 to $1.3 billion in 1998. Imagine how much more of the pie the pharmaceutical companies are getting now, 8 years and many marketing dollars later. Also imagine if that money were available for services, such as medication education and close monitoring for efficacy and side-effects. Decisions about medication should be based on efficacy and side-effects, not classification alone. And Clozapine shouldn’t be abandoned just because it is off-patent and isn’t being marketed by the Big Pharma reps. If money were freed up for better medication management services, clinicians would be in a better position to evaluate efficacy and side-effects and make more informed prescribing decisions.

Being objective about violence

A recent study of mental illness and crime in Sweden seems to be causing some confusion. The study results are being cited by what appear to be opposing views in the debate about the link between mental illness and violence. It is nonetheless a very informative study that can help all of us better understand this issue if we look at the data objectively.

One the one hand, the researchers point out that many studies have focused on the relative risk of violence in mental illness – the risk of violence for a person with mental illness as compared to the risk of violence for a non-mentally ill person. They note that focusing on relative risk “gives an incomplete picture” because it does not reflect the “proportion of violent crimes that can be attributed” to the mentally ill. In other words, because the mentally ill comprise such a small percentage of the population (1.4% in Sweden during the study period), their contribution to overall violent crime is relatively small. The researchers calculated a “population-attributable risk fraction” of 5.2% meaning that the mentally ill were responsible for only 1 in 20 violent crimes in Sweden. A simpler way of looking at it, which results in a slightly higher number, is that there were 21,119 crimes committed by mentally ill out of a total of 324,383 violent crimes in Sweden during the study period, meaning 6.5% of crimes were committed by people with mental illnesses. Thus, it is correct to try to defuse the stigmatization of people with severe mental illnesses by saying that they are responsible for a small fraction of violent crime. It is also true that only a small percentage of the mentally ill are violent. The study found that only 6.6% of the mentally ill (6,510 out of 98,082) were convicted of a violent crime.

On the other hand, the researchers found that patients with severe mental illnesses were nearly 4 times more likely to have committed at least one violent crime as compared to the general public (6.6% of mentally ill patients had a violence conviction compared with 1.8% of the general population). The study confirms findings in the U.S. that the relative risk of violence is higher for severely mentally ill patients (specifically those with diagnoses involving psychoses) than for the general public. The CATIE violence study found that patients with schizophrenia were 10 times more likely to engage in violent behavior than the general public (19.1% vs. 2% in the general population). In other words, it is more likely that a person with mental illness will be violent than a person in the general public. It is also interesting to note that patients with schizophrenia were nearly twice as likely to be violent (the number of violent crimes committed was 328 per 1,000 patients with schizophrenia and 173 per 1,000 patients with other psychoses).

Because there is a greater risk that people with mental illness may be violent, it is important for families and caregivers to recognize and have a better understanding of what factors contribute to this risk. For example, a recent CATIE study (see Figure pg. 496) reported that schizophrenia patients experiencing certain positive symptoms (hallucinations, paranoid delusions, and grandiosity) were 9 times more likely to have an episode of serious violent behavior than patients who had negative symptoms (apathy, social withdrawal, poverty of thoughts, blunting of emotions, slowness of movement, and lack of drive). This information is also important in terms of public policy because it supports the need for more timely and effective emergency psychiatric interventions when the most severely mentally ill become symptomatic.

Additional data from the study illustrates why it is important to understand the link between violence and mental illness. In a separate analysis by type of offense, researchers found that patients with severe mental illnesses, who accounted for only 1.4% of the general population, were responsible for 18% of homicides and attempted homicides in Sweden. That is not a statistic that can be ignored.