VA Tech: The HIPAA Excuse?

The HIPAA privacy rules (see summary) were never intended to block people from getting needed medical attention. Yet, yesterday we learned from Governor Kaine’s Panel on the Virginia Tech shootings that school officials and mental health professionals claimed the law prevented them from communicating with each other and getting Cho the treatment that he so obviously needed.

That’s simply not true. As the Virginia Tech report and its authors explained, the HIPAA law doesn’t bar all communications about a person’s medical history. In fact, there are specific provisions for medical emergencies, for sharing information with family members and caregivers, and for communicating the presence of a person in the hospital (about page 4).

Another important fact is that the privacy law does not prohibit mental health professionals from LISTENING to information about a patient.

For a more detailed look at releasing health information to the families of people with severe mental illnesses, read this Catalyst article.

Everyone failed Cho: VA Tech panel calls for better commitment law

What happened to keep Seung Hui Cho from getting needed treatment and at what point could the Virginia Tech massacre have been prevented? The state-appointed panel charged with answering those questions released its report today, stating in part that “The Virginia standard for involuntary commitment is one of the most restrictive in the nation and is not uniformly applied.”

The report details Cho's mental health history and the many lost opportunities to help him, and makes recommendations to improve Virginia’s restrictive mental health treatment law.

The scope and extent of how Cho was ultimately failed by every facet of the system is stunning. Read TAC's press release on the report.

Killing yourself with a cop's gun

Weak treatment laws often require a person to be a danger to themselves or others before getting involuntary treatment. As we often lament on this blog, this keeps the mental health community from intervening because the person is not yet dangerous, and forces law enforcement to become involved when a person finally deteriorates to that condition.

Occasionally, these encounters with law enforcement become “suicide by cop.”

According to family members, that was the case on Monday when Guy Ray III held four women hostage in a Louisville, Kentucky bank. After releasing the hostages, Ray emerged from the bank waving what turned out to be an air rifle at officers. Ray died of multiple gunshot wounds.

According to his sister Ray had been on and off medication for his mental illness that he had struggled with most of his life.

Guy Ray III left police no choice but to shoot him when he came out of a bank Monday and threatened them with a firearm.

“[He] was there to make it happen. He had a goal. He was going to force them to shoot him."

Care before jail

Flint, Michigan is currently implementing a pilot mental health court program to help reduce the number of individuals with a severe mental illness that get caught in the state’s jails and prisons. Mental health courts are laudable and we hope they continue to be embraced throughout the country. But people shouldn’t have to be arrested to get the care they need.

With the passage of Kevin’s Law, Michigan gave its citizens a proven option for obtaining needed mental health treatment without the burden of the criminal process. It is already a reality in other parts of Michigan. The citizens of Genesee County deserve that same opportunity.

A sad weekend in California

Families and police officers are two of the groups most at risk for being on the receiving end of violence by those with untreated mental illnesses

In Salinas, John Vierra, a 44-year-old man with schizophrenia fatally stabbed his mother, Maria James. Vierra had stopped taking his medication last spring.

In San Diego, Alan Kosakoff is in critical condition after he was shot by two police officers. Kosakoff, who has been diagnosed with schizoaffective disorder, attempted to run over the two officers when they tried to arrest him for driving 114 mph. Kasakoff had not been taking his psychiatric medication.

Today, one California man faces time in prison; the other, if he survives, will also likely face the criminal justice system. Both men were not taking their prescribed medications for severe mental illnesses.

Yet most California counties still haven’t implemented Laura’s Law – a way to get court-ordered outpatient treatment for people with severe mental illnesses. Access to treatment, and to programs such as Assistant Outpatient Treatment, maintain treatment compliance, an important step in helping prevent such tragedies from occurring in the future

Perhaps it’s time to help people in California with severe mental illnesses get treatment, because without it, there are certain to be more sad weekends.

Different country, same problems

In an article in the Edmonton Sun, a man in Canada describes his family’s struggle with his daughter’s schizophrenia:

"I've been dealing with this for years," says Grant, whose sister is also schizophrenic. With his daughter, he's endured countless sleepless nights, desperately trying to figure out where Candice has disappeared to, and waiting on tenterhooks for the teary phone call and plea to come get her.

When Candice refuses to take her medication, Grant is powerless to do anything about it. She is an adult, so he can't force her. In fact, he can't even get doctors to discuss her case with him, because that would be a violation of her privacy.

…But the laws don't seem to be working for his family, which is struggling to keep Candice safe when she needs protection, while at same time trying to allow her as much freedom and autonomy as the situation permits.

$5 million band- aid

In the wake of the Samuel Kapp’s suicide in Olympia, Washington, state officials are examining Washington’s bridges. On Wednesday, Kapp, a 32-year-old man with schizophrenia, committed suicide by jumping off a bridge.

In Seattle, officials have already installed signs and an emergency phone on the Aurora Bridge which averages four suicides each year. City officials are considering adding $5 million of fencing to make it more difficult for people to jump.

Deterrents such as fencing and signs are fine, but do little to help the person who has a severe mental illness and is suicidal. Better to tear down real barriers to treatment. This “solution” is a band-aid that doesn’t even begin to touch the much deeper issues of treatment for severe mental illness.

A $5 million fence is an awfully expensive band-aid.

NIMH's Insel:"Our failure to talk about the risk [of violence] has lead to a loss of credibility..."

Tom Insel (TI), director of the National Institutes of Mental Health, interviewed on Schizophrenia Research Forum (SRF), on violence and stigma …

SRF: I just noticed a new paper from the CATIE study showing that violence in schizophrenia has roots in pre-disease conduct problems (Swanson et al., 2007). It seemed like a fitting bookend, if you will, for a year that saw the death of Wayne Fenton and the killings at Virginia Tech, and so I wonder if we should be cautiously optimistic that a study like this could have some positive impact on efforts to combat stigma and perhaps focus research on root causes of violence and things like that. Any thoughts about that?

TI: Yes, it's a really interesting question; I like the way you posed it. In the past, my own sense of the community is that there's been an avoidance of talking about violence in schizophrenia because of a concern that it would increase the stigma. In fact, the data support the proposition that people with schizophrenia are more likely to be involved in violence either toward others or toward themselves unless they're treated. So there's every reason to treat people with this illness to reduce violence. But we also shouldn't avoid discussing the risk of violence in those who are not treated. Our failure to talk about the risk has led to loss of credibility in some of our attempts to reduce stigma. People with this illness, or with bipolar illness during the manic phase, are more likely to be violent than the general population by several-fold. Some people estimate that 50 percent of manic episodes involve violence, sometimes self-directed but other times not. What's interesting about this new study is that it breaks down the problem here; at least it clarifies that we may be talking about two quite different things. On the one hand, people who have a history of conduct disorder and who are at a greater risk for violence towards others, and for whom schizophrenia in some ways disinhibits them, exacerbates violent tendencies that they've had in the past. And that appears very different from people who are schizophrenic and are acting out a delusional fantasy.

As to the Wayne Fenton murder, in recent newspaper coverage of that, this young man said that he had a particular delusion about Dr. Fenton and he was trying to liberate Dr. Fenton's soul as a way of cleansing it. That's not sociopathy.

A sad day...

Believing microwaves were aimed at his brain and that aliens were using wires and television to tap into his brain wasn’t enough to get Farron Barksdale treatment. But when he killed two police officers he thought were aliens, it was enough to get him a prison sentence of life without parole. It turns out it was a short sentence; Farron Barksdale died today.

Today is a sad day for the family of Farron Barksdale. It’s also a sorry reflection on our mental healthcare system and treatment laws. How long will we keep neglecting those who need treatment?

Advocating from an ivory tower

We always assumed that Michael Allen and his cronies at the Bazelon Center (Michael is a former employee) were just ignorant of the science behind the need for commitment laws, or perhaps too busy to actually READ the statutes on outpatient commitment and thus assumed the worst. They certainly are eager to shut down the nation’s psychiatric hospitals, so one would think they would be strong proponents of outpatient commitment – a way to get people help in the community.

Is it possible that they have been in that ivory tower for so long they don’t actually know what life is like behind bars if you have a mental illness?

How else can you explain Michael Allen’s bizarre comment on NPR that he doesn’t know if it is worse for a person with a severe mental illness to be in a psychiatric hospital or in prison.

We wish someone would push Bazelon and their ilk to offer some real solutions – it seems now that they are opposed to psychiatric hospitals, mental health courts, and outpatient commitment. So perhaps they have no choice but to downplay the victimization and brutality that face people with mental illnesses who are locked up. After all, if Michael Allen has his way, looks like that is where more and more of them will be ending up.

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?

Our priorities are a CAT-astrophe

From TAC President E. Fuller Torrey:

I was recently startled to learn that homeless cats are a higher priority than homeless people with schizophrenia.

Alley Cat Allies was organized in 1990 to protect homeless and feral cats by promoting programs for their sterilization and vaccination rather than their euthanization. The organization has three regional offices and a staff and budget three times larger than TAC's.

I like cats, but somewhere along the line our priorities have become badly skewed.

TAC is the only organization trying to promote treatment for individuals with severe psychiatric disorders who are not being treated - the ones who are ending up homeless on the streets and in jails.

Homeless people with untreated mental illnesses certainly deserve our intervention. It is clear we have a lot of work to do, and we need your help to do it.

Support for assisted outpatient treatment (AOT)

While the Treatment Advocacy Center is the only organization that has a dedicated mission to increasing the use of AOT, numerous other organizations and individuals support AOT including:

• NAMI’s official policy states that AOT should be used as a last resort and that “Court ordered outpatient treatment should be considered as a less restrictive, more beneficial and less costly alternative to involuntary inpatient treatment.”
• The National Sheriffs Association recognizes that “the consequences of non-treatment can also be prevented by having laws that allow a court to order treatment in the community for individuals who are in need of treatment but refuse it (also known as Assisted Outpatient Treatment).”

Closing the barn door ...

Lots of bloggers have been posting raves for the recent Time Magazine article "Decriminalizing Mental Illness." It, like many other articles, is very supportive of CIT - but most all who praise this program seem to miss the fact that by the time someone with an untreated mental illness lands in front of even the most well-trained, compassionate CIT officer, they are in trouble - because they have already deteriorated to the point when law enforcement is involved.

Cheer for CIT if you must, it is certainly better than no CIT. But it is no replacement for earlier intervention - and real help from well-trained, compassionate mental health professionals.

Death sentence in Alabama

"Farron Barksdale will die in an Alabama prison," said the prosecutor when Barksdale was last week sentenced to life without parole.

Doubtful she knew how soon those words might come true.

Today Farron Barksdale is on life support. [UPDATE: Barksdale has since died.]

Prison is a notoriously terrible place for those with severe mental illnesses - and whether something happened to Barksdale during intake, as some reports indicate, or whether he succumbed to record-breaking heat in a facility with no air conditioning, the fact remains that Barksdale walked through the door of Kilby Correctional Facility and will come out in a hearse, whether it is this week or 50 years from now.

Barksdale, who has schizophrenia, had called 911 for help - when two officers pulled up in his mother's driveway, he brutally shot and killed them with a high-powered rifle. Records and Barksdale's attorneys indicate Barksdale believed microwaves were being aimed at his brain - in fact, he tore the cable out of his mother's home because of his belief "they" were using the wires and television to tap into his brain. At the request of Barksdale's mother, a probate judge had committed Barksdale to mental institutions five times previously. Yet he was off medication when the murders occurred.

Three people died because one man was not getting treatment.

Nice job, Alabama.

Turned Away

It is often debatable which is more likely lead to irrational situations – the untreated symptoms of severe mental illnesses or the laws governing their treatment.

Of those turning to Riverview Psychiatric Center and sick enough to meet the criteria for admission, 85 percent were turned away due to lack of capacity in a five-month period.

Those patients did not have the mental capability necessary to volunteer for treatment under Maine law but were not, at the same time, dangerous enough to meet the state’s restrictive criteria for commitment.

Almost six out of seven of those turning to this state hospital for care were left instead, by law, in a psychotic limbo.

Guest Blog: Justice and Discrimination

Guest Blog
Written by Angela Vickers, author of Brain Bondage- The Delay in Mental Illness Recovery

When I first faced injustice due to my mental illness diagnosis, I thought that all I needed was a good lawyer who understood bipolar recovery. I assumed there was justice, even for those with a mental illness diagnosis. The more I asked for legal help, the more I learned about prejudice and how little lawyers knew about mental illnesses. I understood the problem, as I knew nothing about psychiatric illness when I experienced my manic episode at age 36. Like me, I learned that few people knew even the most basic facts about bipolar and the other mental illnesses.

Discrimination was and is pervasive.

As with other national battles for civil rights, a victory for those with mental illness will require an educated media, an informed legal community, the support of the faith community, and educators willing to teach new truths to the generations to follow.

Angela D. Vickers’ book Brain Bondage is available through her website:www.angelavickers.net

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.

Felonies before treatment

While mental health courts offer an excellent alternative - treatment instead of prison for people with mental illnesses - they still require that a crime be committed before treatment is ordered. A recent story in San Francisco Weekly profiled mental health courts and the life of Steven Winters and his struggle with mental illness.

“In one year, he [Winters] was evaluated by jail psychiatric workers 18 times, and each time he was released back out onto the street instead of being sent to a treatment program. He didn't slip through the cracks — he didn't want to get better, and no one could force him to.”

“He got into [mental health] court because he finally committed a crime that had serious repercussions — he was charged with attempting to derail a train, a felony.”

Winters is finally getting treatment because legal leverage was used.

“…Winters' case seems to show that sometimes, a little coercion is just what the doctor ordered. It's hard to get a paranoid person like Winters into treatment, notes his caseworker, Kyong Yi, "That's what's great about behavioral health court," says Yi. "Using that legal leverage, they could get him in the door where he wouldn't go otherwise."

That's what got Winters to start taking the antipsychotic medication he'd been avoiding for decades.

Legal leverage works when used in mental health courts and in assisted outpatient treatment (AOT). The difference is that AOT doesn’t require someone to commit a crime before they receive treatment.

It’s too bad California hasn’t implemented its AOT law. People like Winters should be able to get treatment before they commit a felony.

Thin blue line isn't a safety net

Anyone who doubts that law enforcement are increasingly the ones responding to people with mental illnesses who are in crisis needs only to read the news.

Two stories today show examples, from different angles, how the safety of both law enforcement and citizens is compromised when the mental health community abdicates their responsibility to care for people with the severest mental illnesses.

In a courtroom in Athens, Alabama jurors listened to police radio transmissions from the day Farron Barksdale killed two officers. Barksdale had called police asking to be directed to the FBI. When police arrived at his home Barksdale shot ten rounds from an assault rifle at the police cars.

Barksdale, who suffers from paranoid schizophrenia, was sentenced to life in prison without parole.

In Texas, police were called when Jose Vasquez, who was diagnosed with schizophrenia, got “out of control”. When Jose charged at his family with a garden hoe, officers fatally shot him.

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.

He is a great person...when he is on his meds

Approximately 2 million individuals with schizophrenia and bipolar disorder are receiving no treatment for their illness at any given time. Every day we hear stories from family members desperate to get help for the people they love. And every morning when we read the newspapers, we see quotes like these.

“If I could get her on her medications for three days, she would be fine.” [According to her aunt, Melissa Haygood,] who was discharged from a state mental institution when she was 16, rejected by her parents and left at her door, is perfectly normal when using her prescriptions, but trouble starts when the medicines are not used.

"He is a wonderful dad," Rowland said. "He is great as long as he is not sick. When he is sick, then we have problems."

"He had been doing pretty good," Donald Cummings said. "It was only within the last month he decided not to continue his medication. He subsequently shut everyone down. He shut them out totally." When Ronald Cummings chose to take his medication he was a kind, compassionate person who enjoyed cooking and listening to gospel music, his brother said.

If you are a family member facing a similar situation, start by really understanding your state’s commitment law (not all states require someone to be dangerous, though many people think that is the case), then prepare for crisis.