Shot while in the hospital

I just listened to a story on This American Life about Alan Pean, a young African-American man who experienced a severe psychiatric breakdown while living in Houston, Texas. Alan was a college student who had previously survived a couple of episodes of manic depressive disorder. Alan came from a high achieving family with doctors including his father.

Alan found that his mind was overpowered by a delusion  that caused him to jump off the balcony of his third story apartment, make his way to his car and crash through the gates. He drove toward St. Joseph Hospital, a major medical facility in downtown Houston. He crashed and totaled his car into the hospital and somehow told the emergency room staff he was having a manic episode. But he was never treated for his mental disorder. His father who is of Haitian descent arrived a few hours later and also told the staff that his son was having mental problems and yet Alan was still not evaluated by a psychiatrist.

His father left to try to arrange getting Alan help for his mental illness and shortly afterwards the staff had trouble with Alan and called for security. This turned out to be Houston police with guns who were not trained in dealing with psychiatric patients. Alan was tasered, then shot and almost killed and later charged with assault. Although the charges were later dropped there is a disturbing pattern of mental patients being shot or tasered by  police who have little or no training in dealing with them.

There is a New York Times article about the incident involving Alan Pean. People need to be aware of these kinds of incidents and understand that psychiatric patients need help, not bullets. They need people trained to deescalate and force is the last thing you would ever want to use to help someone recover his or her mind.

This story raises other questions, such as what if Alan and his father had been white? Would the outcome be different? Would the hospital staff  you turn to for help be able to recognize that when a white person says he needs mental help, they would hear the person and attempt to provide help? What prevents them from hearing the same statements from people of color? What information is available about the hospital you use and their policy about the use of force? How equipped are they to handle people with a mental illness? Is the person the staff calls for help going to be an armed police officer? And finally, what safe alternatives are there to hospitals for people with mental illness and how widely known are these alternatives?

Time, time, time, what’s become of me?

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Well I just could not resist going back to see what the Unitarians were doing and I must say they have become a little more diverse. I took a picture. Not, not really, but you know this group picture might fit in. I had posted something last year about meeting Mary Devitt and John Hagendorn at Colectivo Coffeehouse. They are relatively new members of the First Unitarian Society and active in Black Lives Matter. They are community activists and raising children who present challenges. When I met Mary she was recovering from an injury that did not seem to slow her down. However, John had an accident on his bike resulting in a brain injury and other difficulties. He is a researcher who has worked on issues related to gave violence and prevention. One of his books is on sale at the church.

People of a certain age will recognize the title of this blog from the Simon and Garfunkel song A Hazy Shade of Winter. I heard the song booming at me as I came down from listening to a forum speaker from Lutheran Social Services tell about her work with refugees and asylum seekers. Indeed, it was a hazy shade of winter with barely a patch of snow on the ground. But the music was quite a bit different from the old days of hearing the choir most weeks several years ago.

It is sad that some things had not changed. It seems that our government policies are creating more and more refugees. The new administration has responded to the crisis by issuing an executive order imposing a ban on travel from seven mostly Muslim countries. Fortunately, our heroes from the ACLU sprang into action and a 3 judge panel of the federal court has blocked the implementation of this unconstitutional mess.

I have all kinds of different emotions about what is happening as time passes. A woman I knew, Molly Cisco, died recently from a brain aneurysm. She was an activist for the rights of people with mental illness, a small business owner and an avid dog lover. She was only 59. People are sharing their thoughts of her on Facebook. I am quietly looking to find a way to become more involved with real life activism and tear myself away from social media. I am meeting new friends and trying to keep up with the old ones. I was very excited to see a picture from my old high school which is putting the finishing touches on a weight room. It is encouraging to learn that one of the oldest high schools in the country is making a comeback.

The sky may be a hazy shade of winter but sometimes you can rock to the beat.

 

 

The poor ask, who will care for us?

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In the Sunday Milwaukee Journal Sentinel the front page story asks, are health systems failing a moral test? My question is simpler, who will care for the poor? I have worked in several levels of mental health including apartment programs, the crisis resource center, the mental hospital and case management, for more than 10 years.  And much has changed during that time. The most dramatic is the downsizing of the mental hospital which now sites half empty. At the same time resources have been shifted towards improving people’s access to resources in the community. There are more organizations dedicated to ensuring that people don’t need the things that inpatient care provides.

When I worked at the hospital, nursing staff morale was low because they saw where it was going. I saw former nurses at a recent listening session held by the Milwaukee Mental Health Board. It was hard not to feel some sympathy for them as they talked about the end of their careers while in their 50s and early 60s.

There are multiple sides to this story. There are tragic stories of people who died at the mental health complex. There are people who did not need to be housed in the long term care units who were assisted in transitioning into the community. There are some acutely ill people being turned away from the mental hospital because there are not enough beds and not enough staff to care for them.

The Milwaukee County Mental Health Complex has always served as the safety net for the sickest and poorest of our residents. The Milwaukee Journal Sentinel asks which of the profitable existing private hospitals will take it over and serve their patients. People who had no insurance always knew the the county was there for them. But those days are rapidly coming to a close. They asked the advocates what they hoped for but I don’t recall anyone asking the people who sometimes become too ill in the community what they would like to see.  If I was a poor person looking at these choices, I would be afraid. And the nights are still cold.

We’re looking for few good people

The Recovery Advisory Committee of Milwaukee is looking for a few good people. This committee is guiding the implementation of the Comprehensive Community Services in Milwaukee County. This is Medicaid benefit that offers assistance to people who are seeking recovery from mental health and substance abuse problems. Its purpose is to cover the life span. In order to hold counties accountable the state of Wisconsin developed guidelines for community input. The largest portion of the committee is to be people who identify as having a lived experience with mental health and or substance abuse.

When we started out, we were meeting that guideline. But some people have fallen away. That is why we need to reach out and bring in more people. If you are interested in severing on this committee you can respond to this blog entry on Facebook, twitter, wordpress or wherever you are reading me. For more information, go to the Milwaukee County Behavioral Health Division website and look for C0mprehensive Community Services. We know you’re out there. Come, give us a hand or two.

My experience with schizophrenia

I have encountered dozens of people who have been diagnosed with schizophrenia and I re-blogged the article questioning whether schizophrenia exists due to my interest in the subject. These contacts have included my personal and professional life. Some of the peer specialists I have worked with probably were given this diagnosis. I have also read books and attended speeches by people were were diagnosed with the disorder.

I consider what we call schizophrenia a spectrum disorder and the amount of recovery one achieves depends on a lot of factors. The amount of natural supports one has, including intelligence, and the range of abilities included by Howard Gardner when he looks at the 7 areas of intelligence. The presence or absence of hope, which is discussed in every article or book I have read about mental health, is so crucial.

It is very discouraging to face a web of people who discourage your every attempt to do things like get married, go to college or do things that people without a diagnosis are able to accomplish. In the stories where people are able to achieve, there are also included tales of support people who said “yes, I will help you”, “I believe you” and “tell me more about your dreams.”

And finally, there is the question of “person first” language for people with this diagnosis. Articles in newspapers and magazines almost always refer to “schizophrenics.” I have also encountered too many people who have taken the label and almost literally plastered it on their own foreheads.

I believe you can have a full and meaningful life no matter what your diagnosis and we should all strive for recovery.

Having story corps moments

I am such a big fan of story corps. The is the npr program of short intimate stories often between family members. Today I heard the story of Bayard Rustin, the great civil rights icon who lived in New York City and was gay. Rustin met and fell in love with a much younger man Walter Naegel in the early 1980s.This was very unconventional because gay, lesbian and bisexual relationships were not legal. Not to even speak of transgender rights.

The only way for them to have a legal relationship was for Bayard to adopt Walter, which he did. I never knew this about Rustin and hearing the story on the weekend of the great victory for equal protection under law for marriage equality was fabulous. There are people whose memories are preserved and shared with so many of us because of this wonderful program called Story Corps. Walter said that when Bayard Rustin died, he told his friends, “we’ve lost him.” Indeed Bayard was a man who meant a lot to many different people. Thank you.

Another tender moment I heard this evening involved Priya Morgentern and her sister Bhavari Jaroff rembering their father Ken Morgenstern. They had recorded their story together as Ken was struggling to live with Alzheimer’s disease. He still remembered his family including his wife who had died 4 years earlier. Although the end was near he remembered how much he loved them all. He had no regrets at all. When Ken died, they played a part of the story corps interview for people to remember him.

The final story was the most recent, with Wil Smith, a father who went through college as a single parent. He secretly kept his daughter in his dorm room because he could not afford off campus housing. Although Smith’s story also ended in death, he inspired his daughter with the way he had put himself through school. That was being a father.

Hearing on Rep. Murphy’s bill for forced mental health treatment

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Murphy Holds Hearing to Support Revised Mental Health Reform Legislation

Mental Health Weekly   June 22, 2015

 

The country’s mental health system, particularly for people with serious mental illness, is “badly broken, getting worse and has to be fixed,” said Rep. Tim Murphy (R-Pa.), chair of the House Energy and Commerce Committee Oversight and Investigations Subcommittee, and sponsor of mental health reform legislation, during opening remarks at the Health Subcommittee hearing June 16 to examine “The Helping Families in Mental Health Crisis Act of 2015.”

Murphy and Rep. Eddie Bernice Johnson (D-Texas) reintroduced the legislation, H.R. 2646, June 4. The legislation has been met with praise and criticism from the field on some provisions, including assisted outpatient treatment (AOT), work conducted by Protection and Advocacy (P&A) agencies and the reform of the Substance Abuse and Mental Health Services Administration (SAMHSA) (see MHW, June 15).

“The Helping Families in Mental Health Crisis Act of 2015” was previously introduced in December 2013 (see MHW, Dec. 23, 2013), which also unleashed controversy over some of the aforementioned provisions.

Jeffrey A. Lieberman, M.D., chairman of the Department of Psychiatry in the Columbia University College of Physicians and Surgeons, told lawmakers during the hearing that the mental health crisis is a “solvable problem.” Lieberman told MHW that testifying before the subcommittee was very productive and interesting. “The reintroduction of the bill with some modifications is seeing more bipartisan support than it did when first introduced,” he said.

Lieberman said he was the only physician on the panel of eight with any scientific expertise. “As the only medical representative, that’s a reflection of the fact that Congress has not viewed mental health care as a medical problem,” he said. “There needs to be political will to effect policy change that will facilitate evidence-based practices made available to people and adequate resources provided to support those [treatments].”

Lieberman added, “Murphy’s bill takes a very important step in achieving that goal. I urged full support of the bill.”

SAMHSA Oversight

Several provisions, said Lieberman, are notable, including the proposal to change the  oversight and leadership of SAMHSA, he said. “The resources SAMHSA has and its funding distribution needs to be guided by scientific evidence and not opinion and ideology,” said Lieberman.

The oversight will be at the level of the U.S. Health and Human Services Department cabinet. That person may be a psychiatrist or psychologist, he said. “There will also be an advisory group to review evidence that emerges from searches each year to determine what services are actionable,” Lieberman said. The thrust of it is to use resources currently being spent by the federal government on mental health care in a way that would produce an impact, he said.

The bill’s provision regarding early intervention and prevention is encouraging, added Lieberman. States that receive block grant funds need to put these funds toward the newest and most potentially effective treatment, like the Recovery After an Initial Schizophrenia Episode (RAISE) treatment model, he said.

“RAISE could pre-empt the devastation that psychotic disorders cause people,” Lieberman said.

“The bottom line is that there may be minor issues and aspects of the bill that will cause some difference of opinion,” noted Lieberman.

“Overall, this is an extremely positive bill and a much-needed one. It should rise above the bipartisan disputes.”

Court-mandated Treatment

Harvey Rosenthal, executive director of the New York Association of Psychiatric Rehabilitation Services, Inc. (NYAPRS), said the organization and other recovery advocates have long opposed court-mandated treatment, also known as involuntary outpatient treatment. “It’s a system-failure issue, not a patient-failure issue,” he said.

Murphy’s first bill on mental health reform (H.R. 3717) noted that states would not have access to the $480 million of community block grants set for all 50 states unless officials implement AOT programs. In the current bill, states would receive a 2 percent incentive if they do implement the programs, said Rosenthal, who testified at the hearing.

The revised bill indicates that states would need to have an outreach and engagement program demonstrating that they’re doing something to serve the people with the greatest needs, he said. “For example, I could have an ACT [Assertive Community Treatment] team, peer bridges and mobile crisis services and that would be enough,” Rosenthal said. “You wouldn’t have to have an AOT program.”

Based on the discussions during the hearing, Rosenthal said he is hoping that the next version of Murphy’s bill will include several clarifications.

He said he is hoping for “a clarification that the state eligibility criteria for states to access Community Mental Health Block Grant dollars will be a strong Outreach and Engagement program for underserved individuals that may but will not have to include AOT.”

Protection and Advocacy

Murphy’s initial proposal would have gutted the Protection and Advocacy program, which provides legal-based advocacy services for people with psychiatric disabilities, by 85 percent. In the new bill, that is no longer the case. However, any advocacy by P&A would have to be based on abuse and neglect.

During the hearing, Mary Jean Billingsley of the National Disability Rights Network provided testimony about her 22-year-old son, Tim Costello, who has a disability.

Billingsley said that often issues faced by people with mental illness are not about abuse  and neglect but about the problem of human civil rights.

Murphy’s bill would limit advocacy support to abuse and neglect cases even with nonfederal dollars, she said. Had it not been for P&A support, her son would have cycled in and out of institutions, she testified.

Rosenthal said that NYAPRS would like to see a broadening of authority for protection and advocacy lawyers that extends beyond the very narrow abuse and neglect standard that currently is in H.R. 2646 to, at minimum, advocate for more and better services for their clients.

Medicaid IMD exclusion

“Clearly, there’s been a lot of attention paid to the proposal to lift the IMD [Institutions for Mental Disease] exclusion,” said Rosenthal. The IMD exclusion prohibits facilities with 16 or more beds for people with mental illness to receive their federal share of Medicaid funding.

In Murphy’s proposal, a private or state hospital can start receiving Medicaid if on an annual basis, people stay there for no more than 30 days, Rosenthal said. An HHS agreement for Medicaid managed care would allow states to bill Medicaid in the same types of facilities if patients are there for fewer than 15 days, he added.

Rep. Paul Tonko (D-N.Y.) said that while he appreciates Murphy’s continued efforts to improve care for persons struggling with mental illness, he does not support the bill as written. “In addition, I am perplexed by the provisions surrounding the Medicaid IMD exclusion and the Medicare mental health 190-day inpatient limit,” he said in a statement.

“Language in this bill implies that these policies cannot go into effect unless CMS [Centers for Medicare & Medicaid Services] certifies that they will not result in any net spending.”

Tonko added, “Both of these policies have been evaluated numerous times by budget analysts and would clearly imply billions of dollars in increased federal spending.

Because of the ‘no-increased spending’ clause, it is unclear how these policies would ever be implemented under this legislation.… I plan to introduce legislation tackling both of these issues soon.”

Other witnesses who provided testimony included former Representative Patrick J. Kennedy, founder of the Kennedy Forum; Paul Gionfriddo, president and CEO of MentalHealth America; Sen. Creigh Deeds (D-Va.); and Steve Coe, CEO of Community Access