Imprisoned because of psychosis

After stealing a car in 1995 and violating parole by making harassing phone calls in 1998, Carl Scherer was sent to prison for seven years. Not surprisingly, the symptoms of his paranoid schizophrenia worsened while in prison.

His records indicate that the medications were constantly being adjusted or changed, such that at no time was he stable for any lengthy period of time," Gottlieb wrote. He also reported that Carl often refused his medication, which led to repeated cycles of psychotic behavior.

Just before Carl was released on parole in 2001 he became so ill he was sent to Cresson State Correctional Institute. Shortly after, Carl’s parole was revoked. Carl was to be kept in prison- a place never meant as a treatment facility- to get treatment for his schizophrenia.

"They took away his only opportunity to get the care he needed and left him in there, not because he didn't meet the criteria for being paroled, but because he has a mental illness. I mean, it's outrageous in my mind. …

"That's not the point of the correctional institutions — to house individuals with mental illness."

Shortly after Carl was returned to the general prison population, he was killed by his roommate.

Carl Scherer was apparently too ill to be paroled, but not sick enough to be kept in treatment.

Why are we relying on prisons to provide psychiatric care? Better yet - Why wasn’t Carl getting treatment long before he was entangled in the Pennsylvania prison system in the first place?

TAC honors grassroots advocates

The board of directors of the Treatment Advocacy Center today announced that Karen Gherardini from Illinois, Janice DeLoof from California, and Jeanette Castello from Pennsylvania are the winners of its annual Torrey Advocacy Commendation.

“Individuals are the heart of the effort to reform and improve our nation’s mental illness treatment system,” said president Dr. E. Fuller Torrey. “The system will not change without the untiring fortitude of individuals like Karen, Janice, and Jeanette. Fighting the entrenched establishment, especially on an issue like real treatment for people with severe mental illnesses, is far from easy. But legislators cannot look impassioned family members in the face and deny the need for real reform. That is why their work is so critical, and why I am so proud TAC is recognizing these three tireless advocates. They are tenacious in their personal dedication and commitment to helping a group of people with few real champions.”

The TAC award recognizes the courage and tenacity of those who selflessly advocate – despite criticism and opposition – for the right to treatment for those who are so severely disabled by severe mental illnesses that they do not recognize that they need treatment.

The board of directors of the Treatment Advocacy Center voted unanimously to recognize these three outstanding advocates. More about the recipients...

Pennsylvania's archaic law

Yesterday the Harrisburg Patriot-News published an op-ed by the Treatment Advocacy Center's E. Fuller Torrey and John Snook. The op-ed explores Pennsylvania's outdated law that prevents treatment of severe mental illnesses, and the "rights" that are protected instead. Among those are- the right to be killed in an encounter with law enforcement, the right to hurt someone you love, and the right to be homeless.

Historically, civil rights advocates passed laws protecting the absolute right to self-determination in treatment. But in their fervor to protect people's rights, they in fact trampled on them.

Pennsylvania's civil commitment law is archaic and inhumane, requiring someone to present a clear and present danger before they can be court ordered to treatment. Clearly, that is often too late.

The law ignores their right to be free from psychosis. Read on...

Pennsylvania advocates speak out

The Treatment Advocacy Center received the following email in response to our blog entry yesterday:

I'm not really sure how anyone who heard or read this story could walk away thinking that her son should just continue to live his life this way, just because that is his choice. There are services in his county, he doesn't want or need them though because he thinks he is fine.

As you'll see from others who testified [at a hearing in Pennsylvania for SB 226] some think that just adding services will solve the problem. All the services in the world are not going to benefit someone who refuses to accept them. Helping someone remain in treatment, however, may in time help them to regain the insight to take charge of their treatment. That's really all we're trying to accomplish with SB 226 for the small minority of people who need this type of assisted outpatient treatment for an initial period of six months, in order to be able to one day be doing well enough to live a healthy life in their community, moving forward in their own recovery.

Want to join the conversation? Send us an email!

A mother testifies in Pennsylvania

In Pennsylvania yesterday, the Senate Committee on Public Health and Welfare heard testimony on SB 226, including this all-too-typical story from a mother who supports the bill.

Thank you for inviting me to speak to you this morning. My name is Dorothy Tengler.

This is my only son, Todd – a blue-eyed, blonde-haired, gentle little boy not unlike all the other little boys on the block. He was smart. He was funny. He was loving. That was 35 years ago. Today, Todd roams the streets of his town, believing he is a member of the United Nations. He has tried to force his way into the back rooms of a local supermarket to investigate a murder he believes to have happened. He has stood outside the elementary school, copying down the numbers of the school buses, telling police officers and wary onlookers that all the children inside the school belonged to him. As a member of the UN, Todd believes he does not need to pay his electric bill, so his electricity is turned off on a regular basis. I can’t reach him on his cell phone anymore because he has taken out the chip, looking for evidence of surveillance. Todd believes that most of us are somehow connected to Hitler. Even me. He doesn’t believe I am his mother. He believes that I ran an illegal sperm bank when he was a little boy, and somehow he is a result of that. Before all this happened, Todd earned a degree in computer graphics, was a talented musician, and loved spending time with the rest of his family.

But when Todd was in his early thirties, he was diagnosed with schizophrenia. Todd’s delusions have been chilling, including being hunted by the FBI in helicopters for, among other evil acts, the murder of his grandfather. He has been hospitalized more times than I care to count. He has been mandated to periods of outpatient therapy, and when forced to take a low dose of antipsychotics, Todd has been highly functioning and able to live a fairly normal life.

But Todd doesn’t believe he is sick. So, he refuses to take medication.

In fact, it has been at least 3 years since Todd last took medication. And his paranoia is escalating. Recently, he was arrested for simple harassment. He didn’t appear for the hearing because, of course, as a member of the UN, he has the power to veto court orders. So, a bench warrant was issued. Todd still doesn’t quite understand what he did to be arrested. He spent 3 weeks in prison before he had someone call me to post bail. He faces a trial at the end of October.

Todd is a ticking bomb. And I wait each day for his life to explode.

Now, I believe that each of us has the right to exert control over our lives – be able to decide if we want treatment for our diseases, be able to say yes or no. However, there comes a point when the very nature of many mental illnesses precludes the ability to reason and destroys any trace of insight. To that end, I believe that as moral human beings, those of us standing on the sidelines of these devastating illnesses need to extend a hand and help these individuals become stable and reclaim their lives. What I don’t believe is that those with mental illness be left alone in
their darkness until they reach a certain level of dangerousness before receiving treatment – like waiting for a certain number of fatalities to occur at a dangerous intersection before erecting a traffic light.

As a family member, a mother, I support PA’S SB 226. With assisted outpatient treatment, we can bring many of these loved ones back to their families, their friends, and importantly, their communities. Pass SB 226 for the millions of untreated persons with mental illness. Pass it for my son, Todd.

Stop. Read. Think.

Liz Spikol gets respect around our offices because she seems to think about and weigh the issues surrounding mental illness treatment carefully. (Even telling visitors to "please do read the entire text of the bill before making any judgments, pro or con. I think people don't do that enough." Amen.)

For instance, on SB 226, a bill under consideration in Pennsylvania to change that state's treatment law, she writes:

As I've said before, I have concerns about this type of legislation, but on the whole, am in sympathy with its intent, which is to get severely ill people treatment when they desperately need it -- providing enough safeguards so people's rights will not be trampled. I know it's a tall order. Is Senate Bill 226 the answer? I can't say.

Of course, a kind word from us will probably make some distrust her. (Sorry Liz.) But we wish more people would stop the knee-jerk reactions and read ... and think ... a little more.

The worst mistake of his life

A recent article from the Pittsburgh Post-Gazette led to a powerful letter from Bill Shane, a former Pennsylvania legislator who called his work in passing the clear and present danger standard, “the worst mistake of his life.”

Pennsylvania’s treatment standard is one of the most restrictive in the nation, requiring an individual to first pose a clear and present danger before receiving necessary care. The result is countless tragedies, and a system that is unresponsive to many of the most severely ill, despite being one of the best funded in the nation. We stand in awe of Mr. Shane’s honesty, and hope his words will help spur needed reform.

Neglecting an important solution

A recent letter to the editor in the Philadelphia Inquirer:

Treating mentally ill

Re: "Colleges cram for campus security," Aug. 26:

The emphasis on what to do after an incident such as the tragedy at Virginia Tech is neglecting an even more important solution.

The final report from the Virginia Tech Review Panel recommended that "the involuntary treatment criteria be improved to allow involuntary treatment in a broader range of cases involving severe mental illness."

Legislation has been introduced to change Pennsylvania law to allow for assisted outpatient treatment (AOT). Similar to New York's Kendra's Law, the goal is to enable more consistent adherence to treatment for the small minority whose severe mental illnesses impair their ability to voluntarily comply through a prescribed community treatment plan.

The Senate Public Health and Welfare Committee will be holding public hearings on Oct. 2. People interested in preventive strategies should attend and ask our senators to vote for SB 226 now.

Jeanette Castello

Guest Blog: Pennsylvania’s Advocacy Effort to Change Treatment Laws

GUEST BLOG:
Written by Jeanette Castello, Co-Chair of the Pennsylvania Treatment Law Steering Committee

According to Pennsylvania’s treatment laws the crisis worker who told Marjorie Miller that she was not able to take Kenneth Miller to be admitted to a hospital was just following the law.

Members of an advocacy effort to change our treatments laws are currently working to see Pennsylvania Senate Bill 226 passed so individuals with severe mental illness and a history of hospitalizations, homelessness, and/or time spent in jail or prison will be able to receive the timely, compassionate treatment they need. SB 226 is modeled after the proven successful Kendra’s Law. This law helps the small minority of people - who are often non-compliant with prescribed medications - to remain in treatment and possibly avoid the tragedies of violence and victimization that too often occur.

Although violent incidents are the ones the media often report on, my personal involvement with this advocacy effort is due to the unbearably heartbreaking time when my daughter suffered from lack of insight into her illness, also know as anosognosia. During this period of time, my daughter was hospitalized 15 times, each time meant a wait for her to reach the “clear and present danger to self or others” required by law. My concern during those sleepless, stress-filled days and nights was the worry that she would be hurt while wandering, sometimes in the middle of the night, following the voices that told her to leave the house.

Opponents of changing our treatment laws say we’re trying to infringe on their rights. Which makes more sense to you? 1) allowing our loved ones to put themselves or others in dangerous situations such as happened to the Miller family or 2) requiring compassionate and timely outpatient treatment for six months (the initial period of time stated in Kendra’s Law and SB 226). As a society, we need to decide what makes the most sense.

- Jeanette M. Castello
Co-Chair, PA Treatment Law Steering Committee
send comments to Jeanette through info@treatmentadvocacycenter.org

The opinions expressed by guest bloggers are their own and not necessarily that of the Treatment Advocacy Center.

Want to be a guest blogger? Tell us why at info@treatmentadvocacycenter.org.

How many people can you beg to help you?

Yet another Pennsylvania family has been decimated by the loss of a parent at the hands of their child with a severe mental illness. Families like the Rafferty’s or the Scanlan’s – in each case the parents were stabbed to death by their children, victims all of a system that ignores the realities of severe mental illness and refuses to acknowledge that some individuals may need more than voluntary services to maintain their care.

Each tragedy details a system far too willing to abandon individuals who cannot maintain their treatment in the community. A treating doctor of Michael Rafferty lamented, “I feel it is pointless to keep him in the hospital for any length of time again and put him back on (medication), which he inevitably will stop taking, he will inevitable start drinking again and he will not follow up with me.” Roger Scanlan’s family said that he had cycled through psychiatric hospitals for more than 20 years; inevitably, he would stop taking his medications and become delusional. Kenneth Miller’s mother pleaded with treatment professionals to admit her son for treatment, explaining that “we know the signs; we saw him start to decompensate.” No matter how hard they begged, each was powerless to help.

Our hearts break for these families, and the countless other families facing similar situations everyday. The question that keeps coming up – how many different people can you beg to help you?

Another tragedy that "could have been avoided"

A letter to the editor in today’s Allentown Morning Call:

Gary Miller did not deserve to die as he did (The Morning Call, Aug. 1). His son, Kenneth, did not deserve to be hospitalized as a criminal. The death of the father by the son could have been avoided if only the health authorities listened to a pleading mother. My cousin Marjorie pleaded and cried out for help on numerous occasions. As late as Saturday (and Monday), she pleaded for her son to be helped.

Several times, she called Crisis Intervention, but always the same questions were asked of the patient. The mother, who had common sense, was ignored. Naturally, the sick patient will answer questions as he sees the situation, not knowing himself how sick he is. A mother, with all her love for her son, knows what is best for him!

A caseworker told my cousin her Kenneth could not be hospitalized for not taking his medicine. He should have been hospitalized and made to take his medicine. Then perhaps, the death would not have happened. It seems nothing can be done until something happens. Well, something did happen -- a loving father was knifed by his loving, but delusional son.

Now, that son is lying in a bed in a hospital as a criminal, instead of being in the hospital as a sick patient, as plans are being made for the burial of his father.

Our family is furious! We call upon all state legislators to look into the matter and change the laws.

John F. McHugh
Allentown

The Pennsylvania Senate has the opportunity to take up the call of Mr. McHugh. SB226 has been introduced in the Senate Public Health & Welfare Committee for consideration this legislative session. Modeled after New York’s highly successful Kendra’s Law SB226 would update Pennsylvania’s outpatient commitment law to ensure that individuals in need were able to receive consistent care in the community. Its passage will be a monumental step forward for Pennsylvania consumers and their families. We urge all of our Pennsylvania readers to contact their Senator and tell them to support SB226 as a commonsense approach to helping the most severely mentally ill.

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."

Warped priorities

In Pennsylvania, still more hospital beds are being phased out – leaving precious few for anyone other than those accused of crimes.

Under a settlement of a lawsuit reached last year, the hospital agreed to phase out 210 of 304 patients, most diagnosed with schizophrenia, in the civil section over four years. The forensic section, for people accused of crimes, will be unaffected.

And in California, mental health workers, physicians, and pharmacists are rapidly shifting from hospital jobs to prison jobs, where pay is a remarkable 40% more. The result is significant staff shortages at the hospitals.

Although several of the state hospitals still accept patients committed through the civil courts, the vast majority of mental hospital patients statewide now are channeled through the criminal justice system … Abysmal medical and mental-health care in the state's prisons prompted federal overseers in two separate lawsuits to order the soaring pay increases as a way of luring competent clinicians to the California Department of Corrections and Rehabilitation.

The California debacle leaves Atascadero State Hospital with only 30% of its allotted psychiatrists. (And now the prisoners who are supremely ill and require inpatient psychiatric care cannot get transferred into Atascadero – and are being sent straight back to prisons, where hopefully all those newly hired medical professionals will find a way to treat them …)

It would be nice if the recent surge in concern over improving prison mental health care was paralleled by a concern for improving care in inpatient psychiatric hospitals. Alas, it seems that the search for quality inpatient beds is being totally abandoned in lieu of improving prison and other forensic beds.

As today’s Washington Post notes:

Patient advocates say the long-term solution to the problem is simple: Make
more beds available. ... [As one expert says] "There is no more expensive way to access the mental health system than through the court system.”

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.

Reaction to police shootings ...

When a tragedy occurs involving a police officer and someone with mental illness, the general outcry is for more police training. Recent tragedies in Philadelphia, Chicago, and two in Oregon follow this pattern.

Everyone seems to accept that this is the way the world is – that people will get sicker and sicker, deteriorating into psychosis. That family members will be left with no choice but to call police. That police will arrive and be faced with someone in deep psychosis.

That seems to be where most people see the breakdown in the system. The letters to the editor, editorials, news articles, all call for police to be trained to better handle someone in psychosis.

There are places long before that point of confrontation with law enforcement where intervention would mean helping someone get back into treatment, keeping them from deteriorating in the first place, ensuring family members do not reach the point of fear, ensuring that confrontation never even happens.

By all means, train police officers. Just remember that this step is a safety net to prevent tragedy after all else fails. As Alan Orr, assistant police chief in Tiger, Oregon, said:

“There are cases where you could have a triple-Ph.D. in psychiatry, and you’re not going to get through to an individual.”

Early intervention through assisted outpatient treatment is a way to intervene before the downward spiral begins.

Your tax dollars and hospital closures ...

"Deinstitutionalization is a thing of the past" – at least that is what most people think.

But, in fact, psychiatric hospital closures have proceeded at a furious pace over the last 15 years. There were so few beds when this new assault started that the people who remain in institutions are those who really need intensive care. Some can be “integrated” with sufficient support, but for others, life becomes a living hell once they are “freed.”

There are many factors driving the closures, but the most egregious is that the very groups that are paid by the federal government to “protect” the mentally ill, Protection and Advocacy (P&As) are the ones forcing many of the closures.

And when the doors are closed, the displaced residents are on their own.

In his book Crazy, Pete Earley investigates the tragic life and death of Deidra Sanbourne, the named plaintiff in the Florida P&A 1988 suit to close a hospitals (pg. 108 – 207).

The Bazelon Center, another group heavily funded by the federal government, joins many of these suits … and they aren’t satisfied with closing hospitals. In New York, Bazelon brought a suit to close boarding homes. In Connecticut, Bazelon brought a suit to get the mentally ill out of nursing homes. Where do they expect seriously ill people to live?

One need only read about M., who was placed in his own apartment when Harrisburg State Hospital closed. The P&A was nowhere to be found when M. ended up lying on a sidewalk – he was scared of his apartment.

For years, these federally funded “advocates” have imposed their own values on people who don’t have the resources to live independently. Rather than advocating to improve conditions in hospitals, boarding homes, and nursing facilities – they try to close them down.

Bad week all around ...

Law enforcement and people with mental illnesses had a particularly bad week.

• June 3. A man trying to commit suicide in Barrett Township, Pennsylvania, threatened to attack police with a knife during a standoff. His mother said he needs psychiatric help.
• June 5. Jury selection began for a man in Rhode Island accused of killing a police officer. “His family and girlfriend have said he was mentally ill and experiencing hallucinations,” notes the story. “They said they had tried to get him psychiatric help before his arrest.”
• June 6. A man in Seattle, Washington, is shot and killed by police during a routine traffic stop. Diagnosed with schizophrenia and bipolar disorder, he had been committed in the past for threatening to kill his parents.
• June 8. A man in Portland, Maine, is sentenced to 11 years in prison. He attacked two homeless men, knocked out one police officer and choked another officer to the point of unconsciousness. He had four assault convictions since 1996, most occurring in a period when he was hospitalized three times for mental illness.
• June 8. A paranoid and delusional man in West Chester, Pennsylvania is sentenced to 18 to 36 years in prison for attempting to kill two sheriffs.

Services can fail when treatment law is weak

An intensive outpatient program that is being discontinued, "changed my life" according to an Albuquerque woman who had been hospitalized for mental illness and suicidal thoughts.

All outpatient programs in New Mexico are voluntary because the state is one of eight that does not have assisted outpatient treatment. So it should not be a complete surprise "that many patients weren't showing up for the nine required hours per week,” according to Dr. John Lauriello, executive medical director at the UNM Psychiatric Center.

If they didn't show up for a full nine hours, insurers wouldn't reimburse UNM for the service.

Opponents said "mandated treatment wouldn't work in New Mexico, due to a lack of services." But, this is a case where services didn't work, in part, because New Mexico does not have AOT.

It is important to have as many options as possible to increase treatment compliance, including AOT, particularly in communities that have a dearth of services. Nonadherence to treatment has significant fiscal (and clinical) implications.

For example, medication nonadherence is a significant factor in hospital readmissions. A study of Medicaid recipients with schizophrenia in California revealed that “individuals who were [medication] nonadherent were two and one-half times more likely to be hospitalized than those who were adherent.” The same study found that those who are non-adherent incur 43 percent more in service costs than those who adhere to medication.

AOT can help reduce such costs by improving medication compliance. Under AOT in New York the number of individuals exhibiting good adherence to medication increased by 103 percent and good service engagement increased by 51 percent.

Last week NAMI gave a D+ grade to the state that spends the most per capita on services – this could be because Pennsylvania is a state that has an overly restrictive AOT law that is rarely used, making services ineffective and inefficient – like New Mexico.

"He won't even talk to the psychiatrist"

''How will we force him to take his medications? He won't even talk to the psychiatrist.''

This quote comes from a Pennsylvania father faced with the task of ensuring care for his son in a state whose laws make that an often insurmountable obstacle. The reality in Pennsylvania for far too many families is that very little can be done to help their loved ones until they become so sick that they pose a danger to themselves or someone else.

Unfortunately, we know that wait can have tragic consequences.

Yates better off in hospital than prison?

Andrea Yates will be moving from prison to a psychiatric facility until her new trial. It is a small win in a story of terrible loss.

Yates’ family had a history of bipolar disorder and depression and she had a history of suicide attempts and hospitalizations. By all accounts, Yates was in a state of continued deterioration in the months before the murders – she would sit and stare into space, she had lost a tremendous amount of weight, she was not showering.

Notes from her April 2001 release from one voluntary assessment say to “contact [the doctor] if danger to self or others.”

On June 18, 2001, her husband said she was still deteriorating and asked that her medication be adjusted. The doctor “told Andrea to think positive rather than negative thoughts.”

On June 20, she drowned her five children.

In interviews after the murders she talked about how her children would “perish in the fires of hell if they were not killed.” She asked for a razor to see if the “mark of the beast (666) was still on her head.” She also mentioned that she had been unable to destroy Satan, so then-Governor Bush would have to do it.

Yes, a psychiatric hospital is a better place for her than prison. How sad that we let the debate reach this point.

MORE: A mother speaks from prison about killing her kids ... Yates’ mother hopes Andrea can get treatment ... Children deserve protection ... Wait until he escalates ... Andrea Yates ... Parents who kill their kids